runbikeswim Posted November 30, 2012 Share Posted November 30, 2012 Deleted Quote Link to comment Share on other sites More sharing options...
Melissa in Australia Posted November 30, 2012 Share Posted November 30, 2012 :grouphug: Quote Link to comment Share on other sites More sharing options...
Catwoman Posted November 30, 2012 Share Posted November 30, 2012 :grouphug: :grouphug: :grouphug: I have no words of wisdom for you, but your post was heartbreaking. Your sister sounds like a wonderful mom and your nephew sounds like a kind, decent, and loving young man. I wish things could be different for them, and I hope that perhaps someone here will be able to give you some hope for your nephew's future. Quote Link to comment Share on other sites More sharing options...
fraidycat Posted November 30, 2012 Share Posted November 30, 2012 :grouphug: :grouphug: I'm sorry - I have no advice. I wish I did. :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
myfunnybunch Posted November 30, 2012 Share Posted November 30, 2012 :grouphug: :grouphug: :grouphug: How did he qualify for special education? I know it's a long shot, but if she hasn't had him assessed and labeled recently, I'd start there. A young adult without the academic skills to graduate high school and without the adaptive skills to safely lead an independent life is disabled, even if his iq tests within the normal range. The label which initially qualified him for special ed services makes a good starting point. If she can gather enough evidence to prove disability, it will qualify him for some disability services. As a 19 y.o. junior, is he still on an iep with the school? :grouphug: My heart breaks for them. It is painful enough to make the transition to adulthood with a child with a clear (and clearly documented) disability. I can't even imagine how much more worrisome and frightening it must be to be in their shoes. Cat Quote Link to comment Share on other sites More sharing options...
A.Balaban Posted November 30, 2012 Share Posted November 30, 2012 I have no advice, only :grouphug: and prayers for your sister and her son. Quote Link to comment Share on other sites More sharing options...
MomatHWTK Posted November 30, 2012 Share Posted November 30, 2012 Is she medicating for the ADD? It really has made a difference here. It is definitely not a cureall, but I do see a difference. It might help with the inattention enough that he could manage life skills better. Processing speed is a tough one. The information gets into the brain but doesn't always come back out when it is needed. What about a behavioral psychologist who could work regularly on step by step living skills? (I think her school system has not done everything they could based on what our doctors have told us our local system would offer. But that's probably water under the bridge now. Every district is different. :() Quote Link to comment Share on other sites More sharing options...
kalanamak Posted November 30, 2012 Share Posted November 30, 2012 Every case is so different, but I have only a couple of words of advice: don't have her be his only social support, e.g. live with her, she takes him everywhere, etc. If something happens to the parent, the child, now 30 or 40 or 50 with no other "world", they can be overwhelmed and decompensate. be thankful he is sweet natured. This goes a long ways! consider starting the long application for SSI. A "COPES" eval can give a professional idea of what he is safe or not safe with. Quote Link to comment Share on other sites More sharing options...
Pippen Posted November 30, 2012 Share Posted November 30, 2012 Has she had a private neurospsychologist assessment done? Has he been seen by a neurologist? Have they taken him to a top medical facility like Mayo Clinic to see if there's something neurologically unusual going on that local doctors are missing? I ask because sometimes parents look to schools and tutoring centers for evaluations pertaining to academic performance when they really should be seen by medical professionals. Students whose processing skills severely impair their ability to function often are placed in cognitively impaired classes where the focus is on basic life skills. These classes have very small class sizes (ie 4-8 students) and there are usually aides in the classroom. Students who are more severely impaired don't always go through typical vocational training--they have one-on-one aides that work alongside them to teach them job skills. There's very little focus on tests and quizes. I ask this gently, but I wonder if your sister has rejected offers of certain placement for him or has pushed for a setting such as I described above? I had a relative who was insistent her son not be given certain services at school because she had a line drawn below which she wouldn't allow her son to have services. It was as if she believed if she pushed hard enough and spent money on the right tutors the problems would go away. Determination, money, and hard work kept him out of X placement, but it didn't prepare him well in the long run. Quote Link to comment Share on other sites More sharing options...
DawnM Posted November 30, 2012 Share Posted November 30, 2012 If he cannot graduate or do mainstream education, I would be pushing for him to re-enter special ed services. Resource classes, etc......there is no reason he cannot graduate within the boundaries of his abilities. That is a failure of the school to accommodate him. I would be in there tomorrow demanding he get the help he needs OR I would pull him out and homeschool him and get him graduated. There indeed may be a job out there for him. Many companies hire those with minor disabilities. He could also look at some trade/tech schools and their offerings as well. And you know, at 19 and a junior, if he truly did fail this year, I would be looking into an adult ed program for next year (if I didn't homeschool him.) I wouldn't leave a 20 year old with 17 year olds. This is just my .02, but I guess I just don't want anyone to fail and there are ways to get everyone to succeed within their own capabilities. I also wouldn't leave him where it is a sure bet that he will fail. Dawn Quote Link to comment Share on other sites More sharing options...
bettyandbob Posted November 30, 2012 Share Posted November 30, 2012 If he truly will not be able to work, unless your sister is quite wealthy, she will likely need some sort of disability income. She needs to comb through the years of testing results, special education qualifications and find something will "fit" a diagnosis needed to qualify. A lot of times an actual diagnosis needs to be made by age 18. Sometimes they can take data prior to age 18 and come up with a diagnosis. My neighbors are doing this now with their dd who is almost 20 and due to depression has not been able to work or go to college. They cannot provide her health insurance and economic support forever. Adults who qualify for disability generally have worked for a required amount of time and then became ill or injured. The process is different for a young person who has never worked. Since your nephew has been in sp ed, at some point there was some kind of label. The school tested him. It sounds like his mother tested him privately. Your sister has probably got the data somewhere. Working through the process of qualification is a lot of work, especially when you have to piece it together. Once your nephew gets qualified for support, he can be qualified for job training and get on a waiting list for housing (if something happens to your sister). The thing is, your sister has got to take steps now. She may be able to handle a good natured young adult now. However, if all she does is care for him and all he does is go whereever his mom goes, their lives will close in on eachother and things could be difficult in 10 years and very bad in 20 years. There's a church near me (mega church) that has a mission in developmental disabilities. They provide all kinds of help and run an adult day program. In addition to qualifying for disability services through the government, your sister needs to look at community resources to extend her network. She should do this now while things are "fine" and she's "handling it" . "handling it" falls apart quite fast when a family member has these needs. It sounds like the schools signed him out of sp ed services. If your sister can get him back in good. If he is in sp ed services she needs to be talking to the schools transition team about what is next. Quote Link to comment Share on other sites More sharing options...
amy g. Posted November 30, 2012 Share Posted November 30, 2012 I had a young neighbor who sounds very similar. I know she continued public school until 20 but it was in the adult program. Then the school got her a job in the elementary cafeteria serving food. She seems to be doing great. She is always very happy. Quote Link to comment Share on other sites More sharing options...
JFSinIL Posted November 30, 2012 Share Posted November 30, 2012 By law the school has to provide an education until age 22 (my 21-yr-old is in his last year at public school) BUT you have to agree the student will not graduate with other seniors when the time comes (say, at age 18ish depending on the student) for the senior class to graduate. If in Special Ed...with an IEP (which he has) it is time to insist on his being in a transitional classroom to work on life skills, not keep pushing the typical academic route. My son is in such a class - they work on life skills (banking, shopping, ordering food at the fast food place etc.) and job skills (largely janitorial at the local old folks home, etc.). Plus the paperwork must be started - if it hasn't already - for SSI/Medicaid. The parent needs to be made a guardian, if that hasn't been done yet. Note - a doctor has to agree that the person needs this, and is unlikely to be able to take care of their own affairs or live independently. I am my son's mom...and legal guardian...and representative payee for SSI. Quote Link to comment Share on other sites More sharing options...
runbikeswim Posted November 30, 2012 Author Share Posted November 30, 2012 Thank you for all the advice. He is medicated and he has seen a neurologist for some of his testing. And he does have an IEP and he still receives sped services. I just meant he was mainstream in his classes but he does still qualify and receive sped services....more time for tests, and he is given a bit of a lighter course load. I will have her look into the adult disability option, but he seems to fall into a grey area. Quote Link to comment Share on other sites More sharing options...
Twigs Posted November 30, 2012 Share Posted November 30, 2012 :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
emeraldjoy Posted November 30, 2012 Share Posted November 30, 2012 First of all....I have a sister with a little boy, her first...we are very close...I can't imagine your heartbreak and sense of helplessness......she is lucky to have you though. Does he have any passions? This child was created for a purpose....I am sure you know this......his life is not for naught......there is absolutely a reason he is here....I believe that with all of my heart......and I also belive that G-d knows the answer to this. my heart is with you. Emerald Quote Link to comment Share on other sites More sharing options...
butterflymommy Posted November 30, 2012 Share Posted November 30, 2012 I know someone with a son who is similar. At age 20 he could not understand what a simple fraction was and can't really compose a grammatically correct paragraph. This after thousands of $$ on tutors, programs, private schools, and his parents are very caring and patient. He is average IQ, no diagnoses. The son is now working as a counselor for troubled teens and getting a degree in counseling from an "easy" private college. Can he drive, does he have a license? Quote Link to comment Share on other sites More sharing options...
Alessandra Posted November 30, 2012 Share Posted November 30, 2012 Hoping for the best.... Quote Link to comment Share on other sites More sharing options...
nevergiveup Posted November 30, 2012 Share Posted November 30, 2012 His medication might be part of the problem. We tried several stimulants and a non stimulant with one of our sons and they seemed to help initially but over time resulted in mental slowing. I took him to a therapist who uses biofeedback--she hooked him up to a machine that measures all different sorts of brainwaves and basically said he is sleepwalking. She also said that stimulants don't help kids with his brain wave pattern. We have not started therapy with her yet but I thought what she had to say was interesting. I would: Have him have a complete physical if he has not had a current one. Measure all the blood levels like thyroid, vitamin D, liver function, hormones, etc. Have him checked for allergies. They can affect kids in vastly different ways. You can read Dr. Doris Rapp's book, Is This My Child, for more information. It is fascinating to know that allergies can be a lot more than just runny noses, hives, or having your throat swell up--they can result in lethargy, mood swings, and a lot of other things. Nevergiveup Quote Link to comment Share on other sites More sharing options...
jujsky Posted November 30, 2012 Share Posted November 30, 2012 Is she medicating for the ADD? It really has made a difference here. It is definitely not a cureall, but I do see a difference. It might help with the inattention enough that he could manage life skills better. Processing speed is a tough one. The information gets into the brain but doesn't always come back out when it is needed. What about a behavioral psychologist who could work regularly on step by step living skills? (I think her school system has not done everything they could based on what our doctors have told us our local system would offer. But that's probably water under the bridge now. Every district is different. :() I have heard from the schools what doctors say a school district will offer and what a school district actually can/is legally obligated to offer are often 2 very different things. Doctors base their recommendations on what would be best for the child. A school district often cannot provide those recommendations. They do only what they have to do. The district agreed my son would benefit from special ed services if we enrolled him. The doctors felt he would need special ed services and could benefit from an aide and therapy. Because his academic test scores were so high in reading and a point or two away from being below-average in math, he wasn't considered academically needy enough to receive services even though everyone meeting with us knew he would benefit with them, but be lost without them. OP, I agree that your nephew should be retested. Has he seen a neuropsych? Quote Link to comment Share on other sites More sharing options...
Susan in TN Posted November 30, 2012 Share Posted November 30, 2012 I can only imagine how difficult it has been! Has she looked into Neurodevelopmental Therapy? My suggestion would be to take a look into the Family Hope Center - www.familyhopecenter.org - they may have something that will help. Quote Link to comment Share on other sites More sharing options...
myfunnybunch Posted November 30, 2012 Share Posted November 30, 2012 Because his academic test scores were so high in reading and a point or two away from being below-average in math, he wasn't considered academically needy enough to receive services even though everyone meeting with us knew he would benefit with them, but be lost without them. Yes. Unfortunately, some children have to fail, and fail repeatedly, before they can qualify for special ed/disability services, and the qualification process is very difficult. Cat Quote Link to comment Share on other sites More sharing options...
FaithManor Posted November 30, 2012 Share Posted November 30, 2012 You might want to consider posting this on the special education board if you have not already. The moms there are fountains of wisdom since they've been navigating a variety of issues and therapies within a system that is rather maddening. As for IQ, let me say this. Many times the results of school system testing are not the same as a good neuropsych. I've personally known kids that will test with a too high IQ with the school psychologist and cannot qualify for help because of it and then will be referred for private testing at the request of a neuropsych and the difference in score is PROFOUND. Now, I don't know all that goes into it, but I would suspect that not all tests are created equal nor are all testing environments and then there is the interpretation of those results by the professional. One educational psychologist told me that her MA training on psyche testing and evalutation was abyssmally poor, but she's required to do it all the time. So, I'd be inclined to find the services of an expert outside the school system for testing and results. A dear friend of mine adopted a child with severe fetal alcohol syndrome. This child seriously needed services in school, but they kept telling her she scored too high...84. But, when they finally took her to a neuro specialist, her actual score was 65. That 19 pt. difference was HUGE in terms of getting her much needed, appropriate help. It also meant they could get a legal guardianship of her at 18. With an 84, the judge would not award it. Faith Quote Link to comment Share on other sites More sharing options...
Liz CA Posted November 30, 2012 Share Posted November 30, 2012 Has she had a private neurospsychologist assessment done? Has he been seen by a neurologist? Have they taken him to a top medical facility like Mayo Clinic to see if there's something neurologically unusual going on that local doctors are missing? I ask because sometimes parents look to schools and tutoring centers for evaluations pertaining to academic performance when they really should be seen by medical professionals. Students whose processing skills severely impair their ability to function often are placed in cognitively impaired classes where the focus is on basic life skills. These classes have very small class sizes (ie 4-8 students) and there are usually aides in the classroom. Students who are more severely impaired don't always go through typical vocational training--they have one-on-one aides that work alongside them to teach them job skills. There's very little focus on tests and quizes. I ask this gently, but I wonder if your sister has rejected offers of certain placement for him or has pushed for a setting such as I described above? I had a relative who was insistent her son not be given certain services at school because she had a line drawn below which she wouldn't allow her son to have services. It was as if she believed if she pushed hard enough and spent money on the right tutors the problems would go away. Determination, money, and hard work kept him out of X placement, but it didn't prepare him well in the long run. This is what I was thinking. Sounds like your sis had him tested in the educational framework but has he been evaluated medically? Quote Link to comment Share on other sites More sharing options...
JFSinIL Posted November 30, 2012 Share Posted November 30, 2012 Thank you for all the advice. He is medicated and he has seen a neurologist for some of his testing. And he does have an IEP and he still receives sped services. I just meant he was mainstream in his classes but he does still qualify and receive sped services....more time for tests, and he is given a bit of a lighter course load. I will have her look into the adult disability option, but he seems to fall into a grey area. It may come down to - will the neuro write a report stating that the person is disabled enough to not be able to work or live independently. And - using the C-Toni or Leiter (tests for deaf kids or other non-verbal folks) my son scores average and, in some areas, above average. Give him the Sanford Binet (or whateveryoucallit) with its sections requiring normal to high language skills, and my son comes out with an overall score that is pretty low. The neuro needs to use or recommend the school use whatever test will most usefully measure the person to get the needed services or label. :-( Quote Link to comment Share on other sites More sharing options...
runbikeswim Posted December 1, 2012 Author Share Posted December 1, 2012 Thanks to everyone. I have a lot of info to think about and I will be sharing these ideas with my sister. Quote Link to comment Share on other sites More sharing options...
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