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  1. #1
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    Feb. 14, 2012
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    Default What Would COTH Do?

    Trying to sneak this in before OT day closes...

    My best friend's daughter (18 months) was just diagnosed with severe Autism and significant hearing loss. I feel awful for her. Her husband is a controlling asshat who is in denial over the whole thing and dragging his feet about everything that involves getting her the help that the little girl needs. She doesn't have any good friends in the area for support, not even her parents. I'm 900 miles away, and we've been best friends for years.

    Everybody who knows the little girl knew that something was up with her, as she wasn't ever quite right. It was at my insistence that they get her checked out. When she finally did, my husband came down on orders and we had to move before the diagnoses.

    Part of me feels guilty for pushing her to get help, then leaving her to deal with it on her own. I know that we had NO control over when we had to move and I know that the little girl needs the help as soon as possible.

    I want to be there for her, but I have no idea how. Saying "I'm sorry" over a text message or phone call doesn't seem to really cut it when faced with something so challenging. Especially when her husband is being such a douche about the whole situation.

    What can I do for her? Anything of significance? She's always welcome in our home, but I doubt that she has the funds to get down here, even if she needed a break. They are way below the poverty line.. and things are going to get worse for her since her husband is an asshat at work (National Guard contractor) and is about to get put on a suspension for losing his temper. He is their only source of income. Now this..

    What do I do?
    Quote Originally Posted by MistyBlue View Post
    I prefer them outside playing as opposed to standing in the barn aisle playing "I can crap more than you"
    New Year, New Blog... follow Willow and I here.



  2. #2
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    Be there for her. Tell her you can't imagine what she is going through, but that you are there whenever she needs you, no matter what time of day. Say it over a phone call.

    Your pushing may have saved that little girl years of frustration when she enters the school system. An early diagnosis is important so that people can adjust expectations and parenting/teaching methods
    From AliCat518 "Seriously, why would you NOT put fried chicken in your purse?!"


    1 members found this post helpful.

  3. #3
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    Jul. 17, 2008
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    The best thing that you can do for her is to steer her in the direction of an Autism support group in the area. She can meet parents in the area who are dealing with the same struggles that she is dealing with and she can learn more about what her future holds.

    I do not have any students who are extreme on the spectrum, but I can say that I love every one of them. There are certain diets that they can put her on that seem to help. As she gets older and goes to school there are a lot of schools for Autistic children that focus on Applied Behavior Analysis to help her.

    Try to be as supportive as possible over the phone and keep your door open, I think that is the most you can do!

    http://www.autismspeaks.org/

    http://www.autism-society.org/
    I WAS a proud member of the *I'm In My 20's and Hope to Be a Good Rider Someday* clique..but now I am 30!!!!!!!!!!!
    My new blog about my Finger Lakes Finest:
    She Ain't No Small Potato!


    1 members found this post helpful.

  4. #4
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    First of all: Hugs to you.

    Second, hugs to her.

    I am sure she is not alone where she lives. I am (sadly) sure there are many more parents who have to struggle with autism problems. (our highschool has a huge staff for autism kids!).

    If she has no other point of attack, she can contact them. I am sure they won't mind helping her find the necessary resources.

    Also, being poor - while it sucks - can have it's advantages: Your friend might be able to get assistance for the child in terms of her disability: Getting a hearing aid or something.


    Not commenting on the husband...she said 'I do' and has not walked out yet....oh well. If you are poor with husband, it can't be much worse without.....


    many jingles and prayers for the little girl and her mom
    and many hugs for you for caring!
    Quote Originally Posted by fargaloo View Post
    Do you not understand how asking "why now?" is EXACTLY part of the reason why assault victims feel silenced?



  5. #5
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    Jun. 24, 2005
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    Alabama
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    Default

    Shriner's Hospitals, Easter Seals, and sources of public help might be available to her and her child. She needs to reach out to the local social services people.

    And the contractors are almost all getting the boot due to sequestration, either soon, or when the contract runs out, and I'd be surprised if he didn't also.
    You can't fix stupid-Ron White



  6. #6
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    Thanks everybody.

    I'm trying to help her find local sources of help. They don't have internet so I offered to do the legwork on Google and whatnot. Thank you for the websites!

    She is an extreme introvert, and has anxiety issues. My concern is that if her husband won't help her or go with her, she won't pursue anything. I have a friend in the area who is dealing with similar (although not as severe) problems with her son. They know each other, through me, but aren't great friends. I'm hoping that they can help each other.

    I just feel so useless being 900 miles away and its frustrating. We've never missed anything (happy or sad) in each other's lives since the beginning of high school!
    Quote Originally Posted by MistyBlue View Post
    I prefer them outside playing as opposed to standing in the barn aisle playing "I can crap more than you"
    New Year, New Blog... follow Willow and I here.



  7. #7
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    Quote Originally Posted by Superminion View Post
    Thanks everybody.

    I'm trying to help her find local sources of help. They don't have internet so I offered to do the legwork on Google and whatnot. Thank you for the websites!

    She is an extreme introvert, and has anxiety issues. My concern is that if her husband won't help her or go with her, she won't pursue anything. I have a friend in the area who is dealing with similar (although not as severe) problems with her son. They know each other, through me, but aren't great friends. I'm hoping that they can help each other.

    I just feel so useless being 900 miles away and its frustrating. We've never missed anything (happy or sad) in each other's lives since the beginning of high school!
    Maybe once she realizes that she is not alone, that it is not the diagnosis of doom she will find the courage to do things she never thought she had in her!

    If she can go to the library, she can have internet!

    You are a good friend!
    Quote Originally Posted by fargaloo View Post
    Do you not understand how asking "why now?" is EXACTLY part of the reason why assault victims feel silenced?



  8. #8
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    Quote Originally Posted by Alagirl View Post
    Maybe once she realizes that she is not alone, that it is not the diagnosis of doom she will find the courage to do things she never thought she had in her!

    If she can go to the library, she can have internet!

    You are a good friend!
    That's what I'm hoping as well! Even if I can't be around for her, at least somebody will.. somebody who is in a pretty similar situation and will understand.

    They only have one car, so are pretty much home bound during the day, but maybe I can hook her up with a shuttle or bus service to help her get there? I know a lot of things are easier when you can look at them yourself, instead of hearing it parroted back over the phone.
    Quote Originally Posted by MistyBlue View Post
    I prefer them outside playing as opposed to standing in the barn aisle playing "I can crap more than you"
    New Year, New Blog... follow Willow and I here.



  9. #9
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    Quote Originally Posted by Superminion View Post
    That's what I'm hoping as well! Even if I can't be around for her, at least somebody will.. somebody who is in a pretty similar situation and will understand.

    They only have one car, so are pretty much home bound during the day, but maybe I can hook her up with a shuttle or bus service to help her get there? I know a lot of things are easier when you can look at them yourself, instead of hearing it parroted back over the phone.
    we have some sort of public transportation, you call in 24 hours ahead of time and a shuttle comes and picks you up and brings you back home. It's cheap, but not really for emergencies. I think they get quiet some use around here.
    Quote Originally Posted by fargaloo View Post
    Do you not understand how asking "why now?" is EXACTLY part of the reason why assault victims feel silenced?



  10. #10
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    Nov. 20, 2010
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    Here in NYS, autistic children are taken very early to early childhood learning centers. Believe much of it is funded, including the transportation. Good luck in her finding the right service for her. And thank goodness she has you! Don't apologize! You did that child a favor!!
    Being right half the time beats being half-right all the time. Malcolm Forbes


    2 members found this post helpful.

  11. #11
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    Quote Originally Posted by Superminion View Post

    She is an extreme introvert, and has anxiety issues. My concern is that if her husband won't help her or go with her, she won't pursue anything. I have a friend in the area who is dealing with similar (although not as severe) problems with her son. They know each other, through me, but aren't great friends. I'm hoping that they can help each other.
    Can you be her "remote support network" -- help her work through what she needs to do to get started in the intervention process and be there as her prodder -- call her to support her before appointments, etc.? That might be what she needs to work through the anxiety issues.

    I am by no means an autism expert but have several friends with autistic children so I've seen families go down this road before. There really is quite a lot they can do to help, and the earlier she gets started the better for the long-term outcome. Remind her repeatedly that she *can* and *must* do what she can for her daughter. With or without the support of the father. Many services are available on a free or reduced-fee basis but it is still extremely expensive to have a lot of therapies (and time-intensive, so it will be hard for her to get another job herself).

    Call, don't text. It's more personal and supportive. Best of luck to you all.


    2 members found this post helpful.

  12. #12
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    Nov. 24, 2006
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    I'm sure her physicians will be pointing her towards different therapies, encourage her to make use of all of them!!! If you can surf the net a bit and find some local groups for her, give her some phone numbers etc that would probably be a big help. The county she lives in may have some sort of transportation service that the baby qualifies for to get to her appointments that would be something to look into.
    Kerri



  13. #13
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    Quote Originally Posted by Superminion View Post

    She is an extreme introvert, and has anxiety issues. My concern is that if her husband won't help her or go with her, she won't pursue anything. I have a friend in the area who is dealing with similar (although not as severe) problems with her son. They know each other, through me, but aren't great friends. I'm hoping that they can help each other.
    Can you be her "remote support network" -- help her work through what she needs to do to get started in the intervention process and be there as her prodder -- call her to support her before appointments, etc.? That might be what she needs to work through the anxiety issues.

    I am by no means an autism expert but have several friends with autistic children so I've seen families go down this road before. There really is quite a lot they can do to help, and the earlier she gets started the better for the long-term outcome. Remind her repeatedly that she *can* and *must* do what she can for her daughter. With or without the support of the father. Many services are available on a free or reduced-fee basis but it is still extremely expensive to have a lot of therapies (and time-intensive, so it will be hard for her to get another job herself).

    Call, don't text. It's more personal and supportive. Best of luck to you all.



  14. #14
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    I want to bring something up that struck a cord with me. I think you are feeling guilty about the child's diagnoses because you were the one that pushed for the testing. YOU DID NOTHING WRONG if anything you have saved them years of struggling and now they are ahead of the game because they know that she needs different attention.

    You mentioned your friend, have the two of them get together. It will be hard being 900 miles away, but at the end of the day I am sure phone calls and a strong support structure is what your friend needs.

    Having literature mailed to your friends house (since she does not have the intewebs) will be useful and may be asshat will read some of it.



    Hopefully asshat will wake up and do right by his family sooner rather than later.



    You did good, the family will be able to prepare and give this child the best tools possible because you took a chance and had her pushed to get tested. You are a hero.


    1 members found this post helpful.

  15. #15
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    Aug. 12, 2010
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    Whoever diagnosed her daughter should have already referred her to the Early Intervention Program in her state, but if they haven't, she should self refer (you can do that). Each state has a program, run with assistance from federal funding, for kids who have, or who are at risk for, developmental delay. My older son was born at 26 weeks and the NICU referred us...it was very helpful. We received PT, OT and social worker services, at no expense to us, until he turned 3 (program stops at that age). When kids age out at 3, the EIP folks will refer to the special ed folks in the receiving school district to determine whether the child is eligible for local services. Ours was not, as his issues were largely resolved by age 3, but friends' kids have moved right from the EIP preschool programs to the school district's special ed preschool program.

    The EIP folks should have plenty of information on other services available.



  16. #16
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    If she can find the right agencies that help families like her, they may find that they will also evaluate the parents, as it sounds, may also need some help with counseling.
    Who knows, their problems may be associated with those of their kid.

    It will take professionals in the field to sort that out, but they have to go sign up for help first.



  17. #17
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    First off, please let me say I am sorry for your friend. It's a really hard row to hoe. And then let me say how awesome a friend you are for encouraging her to have her daughter checked out and continuing to support her!
    As many have pointed out, being near or below the poverty line isn't necessarily a bad thing in this circumstance. There is a huge amount of services she will be able to access. More and more children are being diagnosed with Autism every year and luckily for your friend, that means that more and more support services are becoming available as well. The earlier she accesses these services, the better for her daughter and herself!
    The sooner she can meet others in similar circumstances, the sooner she will start to see what is possible! And knowing she is not alone in this will ease some of her fears. (I know it did mine)
    April is Autism Awareness month so there will be tons of tv shows, fairs, etc. for her to check out. I believe her pediatrician is the first place to start. It may take some time but she can build a team of profressionals that will help her daughter.

    All the best to you both.
    Audaces fortuna iuvat.



  18. #18

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    That sucks and you are a good friend.

    I have seen several little ones with Autism drastically improve with diet and therapy. Please let her know there are things you can do!
    for more Joy then you can handle
    http://dangerbunny.blogspot.com/



  19. #19
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    Thanks again, everybody.

    They are filling out paperwork to get her daughter enrolled into an EIP. It's through the same school that my Mom works, so I'm hoping that she can help navigate a bit, or at least be there. She is a speech and language pathologist, so hopefully she will know what's going on. They are eligible (from my reading) for just about any state program that they will need, including a hearing aid. Tons of paper work, but I have a packet going of all the paper work she'll need to fill out and send in. I'm hoping to get it out in the mail today or tomorrow.

    I don't want to overwhelm her with paperwork and information while she's still digesting what's going on though. They got the final diagnoses yesterday, but have been doing all kinds of testing with the LO for a few weeks. I don't know why it took her so long. Honestly, her pedi sucks, but she is within walking distance of their apartment and took the state insurance, so her options were limited. Everybody else that she's worked with so fan has been great though! Even in dealing with asshat husband...which I won't get into because he really makes me angry.

    Love the idea of being 'remote support' for her! If I can't be there, that's the next best thing, right?
    Quote Originally Posted by MistyBlue View Post
    I prefer them outside playing as opposed to standing in the barn aisle playing "I can crap more than you"
    New Year, New Blog... follow Willow and I here.


    1 members found this post helpful.

  20. #20
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    Quote Originally Posted by Superminion View Post
    Thanks again, everybody.

    They are filling out paperwork to get her daughter enrolled into an EIP. It's through the same school that my Mom works, so I'm hoping that she can help navigate a bit, or at least be there. She is a speech and language pathologist, so hopefully she will know what's going on. They are eligible (from my reading) for just about any state program that they will need, including a hearing aid. Tons of paper work, but I have a packet going of all the paper work she'll need to fill out and send in. I'm hoping to get it out in the mail today or tomorrow.

    I don't want to overwhelm her with paperwork and information while she's still digesting what's going on though. They got the final diagnoses yesterday, but have been doing all kinds of testing with the LO for a few weeks. I don't know why it took her so long. Honestly, her pedi sucks, but she is within walking distance of their apartment and took the state insurance, so her options were limited. Everybody else that she's worked with so fan has been great though! Even in dealing with asshat husband...which I won't get into because he really makes me angry.

    Love the idea of being 'remote support' for her! If I can't be there, that's the next best thing, right?

    Would you mind sharing what state they are located in? Feel free to PM me if you don't want to share it publicly



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