Need help with my son......................

Discussion in 'Fibromyalgia Main Forum' started by doxygirl, Dec 25, 2005.

  1. doxygirl

    doxygirl New Member

    Hi everyone,

    I need some support and direction in regards to my son, he is 18 and has the emotional capactity of an 11 or 12 year old.

    He complete's most tasks incorrectly even small and effortless ones!

    He cries if anyone looks at him crosseyed.

    His happiest moments of his day is when I buy him a new little book to read, or collectors addition card pack, and a lot of times TOYS yes childrens toys!

    He has obsessive compulsive disorder, and many many rituals!
    He is only completly comfortable being with me, and very uncomfortable around most others.

    He has NO desire to drive a car! and the list goes on..........

    It is getting harder and harder financially to support him, and he needs some income of his own, to help out with some of the exspenses of the household and to buy things he wants and more importantly things he needs!

    I know I need to apply for ssi for him, but I have NO idea what to even say when they ask me what is wrong with him..........he was in sdc ( special day classes) all through school, and has learning disabilities as well!

    If you or anybody you know has any information, or can help give me direction as to where to start with this process please write to me..............

    A lot of times employee's that work in public assistance positions can be unhelpful ( and I'm wording it kindly LOL )so I want to be prepared!
    Thanks for your help
    Hugs
    Doxy

    [This Message was Edited on 12/26/2005]
  2. 69mach1

    69mach1 New Member

    i would apply for ssi for him or ssdi if he could qualify...that is what i would do.....


    my mother in law retired in michigan as k-8 teacher and she said she couldn't believe how she had parent just putting their kid on ritalin and go file for ssi just so the parents can get more money a month....

    so you could call an attorney for free adive on the phone...


    good luck...

    jodie
  3. ldbgcoleman

    ldbgcoleman New Member

    HAve you tried the local grocery store for a job?? The Publix store here employs many different types of people including slower learning and seniors. We have several older kids in theraputic riding at our barn and two of them work at the same McDonalds. Just a thought. A job may help with his self estemm and sense of omeraderie with coworkers. Good Luck Lynn
  4. libra55

    libra55 New Member

    I don't have any advice for you right now, but I want to tell you I sure can relate. My 17 year old daughter has Asperger's Syndrome and she sounds very much like your son. Has your son been diagnosed with Asperger's? It sounds like he might have it, with all the collecting of little things and the obsessions and no desire to do anything or move ahead in life.

    As I said, my girl is 17 with the emotional/mental capacity of someone about 12 or 13. She goes to school and comes straight home. If she does any homework, she rushes through it or does a half-baked job on it. Her two main obsessions are Johnny Depp (she collects all his movies and has memorized the scripts to each one, her bedroom wall is covered with Johnny Depp pictures and posters) and The Sims Computer Game, which she plays almost constantly. If anyone disrupts her while she is playing The Sims, she becomes enraged.

    She also does not drive. She has a Learner's Permit and has taken Driver's Ed (which was useless and a waste of money since she could not focus on anything; we just did it for insurance purposes). We have tried to teach her to drive. Her anxiety level is so high that it was impossible, and she doesn't really express any interest in driving.

    I don't know what our next move is going to be, about the driving. There is a man that was recommended to me by the Special Ed department in our school, who works with kids that are having trouble getting the license, and she would qualify for that. She needs to get a license. She has no life.

    When she is not in school, her day consists of sitting on the couch, looking out the window, playing Sims, playing with the dogs, or pestering me. She refuses to do any housework. She has no friends and I am expected to be her constant source of entertainment. She is terrified to use the telephone and has to be reminded to shower and brush her teeth. She has been in the mental health system since she was in the 6th grade. Her IQ is 115 in the left hemisphere and 75 in the right (where the damage is).

    I am very concerned what will happen when she turns 18 because legally she will be an adult, but she is NOT an adult, she is a little child inside. She wants to go to college (art school; she is very talented that way) and she has been filling out applications, but she is making such a mess of them, and quite frankly my husband and I have reservations about her going away to school. There is no way she is going further than an hour away, and we fully expect it to be a complete disaster.

    I feel in my heart of hearts that I too will someday have to apply for disability for her. I understand your pain, Doxy. I wish someone could wave a magic wand and make these kids whole. I know what you mean about it being hard to get any kind of service. I have fought this battle her whole life. It took me 10 years to get a diagnosis on her. If the child functions at a reasonably high level, they don't want to give you any services or assistance at all.

    I did get a neuropsychoeducational evaluation on her, and I keep it current (every three years). And I keep records from the psychiatrist and the psychopharmacologist, so if I need those someday I have them to fall back on. I don't know what else to do.

    I hope there is some wise person on here who has some good advice and has been through it, because I don't know what to do either.

    Take care,
    Michelle
  5. abbylee

    abbylee New Member

    He graduated from high school in a special program and he worked as a bag boy at a grocery store for a while and then he found another job that eventually moved to another state where he couldn't go.

    His mom took him to a psychiatrist and while I don't know the diagnosis, she was able to get disability for the boy.

    I have mixed feelings about that because he has nothing to do and he just goes in and out of the house numerous times a day or he stays in his room. When he's here, he does the same thing.

    If your son can hold a job - any job at all - I would encourage you to help him find one if only part-time. If he likes animals, maybe he could work for a vet. He could even volunteer for a while.

    I'm no expert on this at all - but after being homebound for 3 years now, I know how boring it can be to stay home all of the time with little to do.

    If you can find out anything constructive that he likes to do, go for it! When my other son was in high school, he got a job with Toys-R-Us. His duties were to show parents how to play video games that they wanted to buy for their kids. How cool is that!! He gained experience in sales and had a blast doing it. He's now a college graduate working on what else - computers!!

    abbylee I forgot to mention that he's 30 now.
    [This Message was Edited on 12/26/2005]
  6. dononagin

    dononagin New Member

    My little grandaughter was given a diagnosis of CP even though they are not sure that is what is wrong with her for the benefit of financial aid and the aid that CP can give us with therapy.

    For the last 3 years she has been seen by a dream team of doctors at Stanford that include a genetisist, neurologist, developmentalist,and a nephrologist (she has a deformed kidney too)..

    After 3 years of testing we still don't have a complete diagnosis. We were told that some parents are never given a complete diagnosis.

    To get SSI.. They will evaluate him. Once they do I think they would find him to be incapable of working and you would be set.. I'm no pro though..I'm only going by what I've read.

    Check with Good Will Industries if there is one near you. Most of them work with Special needs young people to try and teach them skills. There is an organization where I live that runs a thrift store that is manned by all special needs young people. They sort the clothes, hang them up, sweep the floor etc. They also have a bike shop there that fixes broken donated bikes for re-sale. The young people with a little more skills are taught to work on the bikes.

    My heart goes out to you Doxy. I also have a young man in my life.. (his mom is my stepdaughters Aunt) I've known him since birth. He has Rubenstein Tabies syndrome (sp?) He is now 25 and his favorite thing in life is to play where is Thumkin.. His mother is very ill with Lymes' and it is getting harder and harder for her to care for him.. She is terrified that if something happens to her he will have to go into a home...

    I know what you mean with the public assistance employees.. seems like folks have to fight way to hard for legitamite help.

    Good luck Doxy and keep us posted on what happens.. My daughter is on the board for a disabled children't rights group in the central coast region of Cali.. I'll see if she has any suggestions..

    Hugs!
    dona
  7. sofy

    sofy New Member

    I dont know the answer but I suspect that without a diagnosis SS filing would be useless. I would start at the school for direction.

    Finding a job where he could fit in would be wonderful and it certainly would be worth the effort. I know 2 young people who are qualified to collect SS and have recently finished with the school system but they were a couple years older than your son when they finished.

    Both of them found jobs that they have kept for several months and are thriving by being out in the work force. The one girl got the job on her own, without agency help, and she is so proud of herself she glows.

    I will pray that your son can find a place for himself or otheres can help find that place.
  8. dononagin

    dononagin New Member

    Doxy.. that's like we don't look sick!

    Sometimes I think it would be easier for my daughter if little Maddy looked retarded..

    People see this beautiful child then they don't get it when she can't walk or talk or squeels because something excited her..

    My daughter Helen gets so frustrated with narrow minded, prejudiced, stupid people who don't realize that every thing this child has learned to do has been a miracle!

    It's hard Doxy.. I want to share with you a poem that was given to me when we first realized that Maddy was going to be a special needs child. You may have seen it before.. It's framed on my wall at home..

    Hugs and Love,
    dona

    Welcome To Holland

    by
    Emily Perl Kingsley
    c1987 by Emily Perl Kingsley. All rights reserved.

    I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

    When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

    After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

    "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

    But there's been a change in the flight plan. They've landed in Holland and there you must stay.

    The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

    So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

    It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

    But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."


    And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

    But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

    [This Message was Edited on 12/26/2005]
  9. laura81655

    laura81655 New Member

    Hi Doxy, Wow, I'm so sorry about the problems you are having and now with your son. The way you described him I was wondering if he has a form of Autism? Especially with the Rituals that you mention. There is a form of Autism called "Aspergers". These kids can be very bright, anti-social, rituals, perseverate(repeating things).

    I would think that you could get a diagnosis from the school Psychologist also.

    My heart goes out to you and your incredible patience! I hope you can get the help you need. Sometimes you have to be so persistent with this, and it has to be especially hard doing this with FM.

    Laura
  10. doxygirl

    doxygirl New Member

    for your advice and suggestions!
    Love and hugs
    Doxy
    p.s. I will keep everyone posted how this turns out!
  11. russiankids3

    russiankids3 New Member

    Doxy, and the first thing you should do is get a definite diagnosis from a doctor. My 10 year old adopted son has been diagnosed by two psychiatrists, one fron the mental hospital he was in , and by a neuropsychologist. We were told to keep all paperwork on Vasya and that the more doctors who are in agreement with his diagnoses the better the chance to get approved the first time around. We live in Indiana and this state has a list of diagnoses listed on the the internet that allow people to know what is definitely considered an acceptable diagnosis for benefits.
    Our son has organic brain syndrome due to fetal alcohol syndrome, mental retardation, reactive attachment disorder, ADD, OCD and a few others. If your son was in special ed placement than I am asuming that he had an IQ test and psychological testing done while in school. You may also want to look into getting him evaluated for developmental disabilities and applying for this program also. This is at the state level not federal..
    To start the ssi process you could go to your local social security office and just ask for the application that needs to be filled out to start the process for your son. I am told that it is not unusual to be turned down the first time you apply even if your son does have diagnoses verified by several doctors.
    If your son would still want to work if he receives ssi or ssdi there are a set number of hours these people can work that will not interfere with their monthly payments.
    I don't know about your state but in Indiana all three of my adopted kids who are special ed students can remain in school until age 21.
    Who diagnosed your son with OCD? From what you write about his behaviors it sounds like he may have autism or Asperger's syndrome. He needs to see a reputable mental health professional who can also help guide you, the parent, on how to deal with the social security office.
    Hope this helps-I feel for you. You must do all you can to get your son what he needs financially ,independent of you. You may also want to look into obtaining guardianship of your adult son so that you still have a say in what happens to him. This does require a lawyer though.
    Hang in there--caring is half the battle.
    Take care.
    Sue
  12. JLH

    JLH New Member

    First, you need to contact a lawyer to have you and/or your husband appointed his legal guardian AND to appoint you and/or your husband (you need a backup) as his Power of Attorney for everything (including medical decisions).

    Then, you will need to see his physician and probably a psychologist/psychirist for an official diagnosis. Maybe each could give you a written statement of what his condition is, his limitations, his IQ, etc.

    Then contact the SSA and file for SSI for him, attaching a copy of what the doctors provided to you. Of course, they will contact the doctors, too, when processing the claim.

    Good luck. I wouldn't think you would have any trouble.

    Holiday Hugs,
    Janet
  13. petsrme

    petsrme Member

    Oh Doxy I wish i could help you. I must have forgotten your son had the obsessive compulsion. I wrote to you the other day in your update post about still not getting a Christmas tree and I mentioned that my daughter was upset that we hadn't gotten a real one. I said that she was obsessive compulsive and had to go through rituals at night. I didn't even realize your son had the same issues. If you get a chance to read it let me know. I didn't see your original post that mention a Christmas tree. I looked and never saw a reference to it.

    My daughter is 16 and functions as a 16 year old except for a few things like not wanting to make calls by herself or go in restaurants by herself. She also seems to have a slight case of ADD. She is very obsessive compulsive though and it worries us. She has to go through a routine every night and if she doesn't do it right the first time she has to start all over. I wonder if we should have her seen by a doctor for this. Please email me and tell me more about what your son does and I will go into more detail too. I hope you get help. It does sound to me like you have a chance of getting your son disability for his OCD. It wouldn't hurt to try. I hope you find a solution. I am so glad you did get a rental car though. I hope you get all this settled soon.

    Did you get my email I sent you about a week ago? I havne't heard from you so I was not sure. Take care love.
  14. jaltair

    jaltair New Member

    I just saw your post. I'm going to past a website (I know this isn't supposed to happen, but it's not advertisement) that will be of great help to you.

    http://www.ssa.gov/notices/supplemental-security-income/

    Just cut and paste it in your browser. When it comes up, save it as you will want to go back to it.

    I know that you live in CA, and would imagine that your son has been involved in the Regional system most likely since he was in special Ed. The records from there will help you.

    If you can't afford to take him to a doctor for eval, the SS system will help you. The info is on the linked page.

    Also, you should be able to become his "representative payee" and handle his money. If he continues to stay with you, you may be allowed to deduct a portion for room and board.

    Please go to the link and it will tell you what you need to do.

    I know how hard it is to have a child with a need, Doxy. My son is bipolar and has other problems as well. He is 32, and unable to function in a job of any kind. He does live by himself in an apt., and I am his "representative payee." I try to let him be as independent as he is able to be by giving him 1/2 of his money on the 3rd (when it goes in the bandk) and the other 1/2 towards the latter part of the mont. If he starts spending too much, I hold on to it. He uses an ATM account that is linked to his Trust. Most trasactions I do online. It works pretty well that way.

    My prayers are with you as you proced to find out what you need to do. It's a long haul at first, however, your son will get money back to when he applied. Some even get money back further than that, it just depends. Take care and let us know how things go.

    Love, Jeannette
  15. petsrme

    petsrme Member

    Oh Dox, don't you fret for one second about it. You know that I can never remember whether I emailed back or not. LOL! I am not even sure when someone emails me back or not. I know how it is! Trust me! I will check my email right now.
  16. petsrme

    petsrme Member

    Oh Dox, don't you fret for one second about it. You know that I can never remember whether I emailed back or not. LOL! I am not even sure when someone emails me back or not. I know how it is! Trust me! I will check my email right now.
  17. Smiffy

    Smiffy Member

    Hi, I can empathise with you Doxy. My son has many of the attributes you mention. He has borderline Aspergers & mild Tourrettes. I have never had any help with him as he is very bright, & he successfully completed a physics degree. This is no use to him as he has no idea what to do with it & neglected himself dreadfully whilst at uni. On the other hand, he is completely honest & very hard working if pointed in the right direction.

    Your first step would be to gain advice from the American Autistic (or Aspergers - sorry, I'm in the UK) society of how to proceed. Your son needs some sort of specialist training to equip him for adulthood, especially for everyday tasks. I'm sure they would also be able to advise you as to benefits. Wish I could contact you privately, these children are such a heartache & a worry as to how they will manage in the future without us. lots of love & hugs