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  1. #21
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    Maybe also send her the Jenny McCarthy book. She talks about how she felt when her son (severe austistic) was diagnosed and her experiences. It might help to have a "friend" in book form when you can't be there. And she's funny.
    Audaces fortuna iuvat.



  2. #22
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    Quote Originally Posted by JLD View Post
    Maybe also send her the Jenny McCarthy book. She talks about how she felt when her son (severe austistic) was diagnosed and her experiences. It might help to have a "friend" in book form when you can't be there. And she's funny.
    oh god, no!

    get somebody with a medical background, not an actress!
    Quote Originally Posted by Mozart View Post
    Personally, I think the moderate use of shock collars in training humans should be allowed.


    4 members found this post helpful.

  3. #23
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    not for medical advice!
    Audaces fortuna iuvat.


    1 members found this post helpful.

  4. #24
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    Dec. 28, 2001
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    Quote Originally Posted by JLD View Post
    not for medical advice!
    The problem is that Jenny McCarthy often discusses various therapies, that have little true research behind them, that she used that "cured" her son. You wouldn't think that people would take her book and what she says as medical advice, but they do.


    2 members found this post helpful.

  5. #25
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    ok, ok, forget Jenny McCarthy... Find any one of a hundred books by a mom who has been there. Hopefully one that shares real life anecdotes and maybe is a little humorous. Not to substitute medical referrals and/or advice but just a voice that says that others have been through and she can do it, too. That there is hope and life can and will go on.
    Audaces fortuna iuvat.



  6. #26
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    Feb. 27, 2004
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    Smile

    I had little or no support and there wasn't much known only the severe were labeled autistic. That was nearly 30 yrs ago. By today's standard my son would be labeled autistic. He was labeled: speech delayed, developmentally delayed, ADD, ADHD, deaf, and MR. All at different times. The DD label was the closest to what he is/was. He also has moderate to severe hearing loss and we aren't really sure how long he was this way or if he was from the beginning. I was clueless, family was equally so. DH was there but fairly clueless as well. It was quite a journey and I call him my forever boy. He's like having a 6'2" 10-12 yr old. He can be very responsible and turn around and be very immature. He hated his hearing aids and quit wearing them at one point and only in the last year started wearing one again. As long as your making forward progress it's good. He never stalled out and got stuck. Well not for long. LOL. He has had a profound influence over every member of my immediate family. From DH, his sisters, my sister and her children and grandchildren as well as me. His own sister named her daughter after him. He is definitely the heart of our family.
    She's in for a long and sometimes frustrating journey but it is well worth it.

    I would never have asked for a child like this, but sometimes you get the child you need, not the one you want. Keep giving her support, listen to her when she vents, esp if hubby isn't interested. That will mean so much. My best friend was hours away but we wrote and she didn't think he was weird or strange when we visited her. It was the only place I felt comfortable with 3 small children, him being the middle one. She is very lucky to have a friend like you!


    5 members found this post helpful.

  7. #27
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    Jan. 4, 2007
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    Look here under books, some of those may help your friend.
    You know her best, maybe some personal stories, maybe some about the laws to get help where kids qualify for it and how, etc.:

    http://www.aapcpublishing.net/



  8. #28
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    May. 28, 2006
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    Florida
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    Minion, you mentioned she couldn't afford to get to your house for a visit...not sure what your financial sitch is, but could you foot the bill for her to come stay for a while? Might do her some good to be around people she loves and feels comfortable around, at least for a few days to decompress and digest everything. Away from the asshat.



  9. #29
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    Jul. 20, 2004
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    I'm an early intervention physical therapist, so I deal a lot with family who just receive these type of diagnoses, and their hopes and dreams for their babies seem "crushed". Autism is very difficult and complex to diagnose in older children, but especially under 18 months. Remember that there's a bell curve for normal. Especially if she's an only child and mom doesn't take her out much, things may progress slower. Hearing issues will also delay development. Once the hearing issues are assesses and appropriate measures are being taken, the communication and sensory aspects may drastically improve. Reassure your friend that often these kiddos who seem so severely delayed early on show a lot of improvement once they start receiving therapy services.

    As for what to do to help her. Help her figure out how to navigate the system. So much of dealing with a child with disabilities is figuring out how to advocate for them. Their case managers are advocating for lots of other kids, so the parents really need to take on this role. Look up early intervention laws in that state for your friend. Figure out how to get every possible service she qualifies for, and then....keep searching, because there is loophole after loophole after loophole to get more and more and more, but people don't know they are out there. Help them to apply for medicaid. Yes, even well off families with primary insurances may end up wanting medicaid so that their child can have more therapy services. It takes a while for the process to go through, so start as early as possible.

    Be an active listener whenever your friend needs that.


    2 members found this post helpful.

  10. #30
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    Feb. 14, 2012
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    Fern Creek, KY
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    Thanks again!

    I appreciate all the responses and advice.

    I'm trying to take everybody's advice, and I actually think that the Jenny McCarthy book would be good for her. It's a pretty easy read and I don't think that she will be brave enough to suggest anything herself. She's going to have a hard enough time getting to the appointments. Something light hearted will be just the ticket for her. I think a lot of it is less how to fix the problem and more feeling like she's the only one in that boat. I know she's not, but living the life that she does, I can see how she would feel that way.

    I am looking into every early intervention program that I can, including finding a way to get her to a new pedi. I think that have somebody that she is comfortable with will help immensely. There are others, about a half hour away, one being my daughter's old pedi, whom I LOVED. If I can find her some form of transportation I think that she would switch.

    I'm also wondering if I can get a social worker or something similar to help her out, since they are low income? I don't know how it works, but if there was somebody with a good head on their shoulders who could 'be in her corner' at appointments so to speak, at least until she gets comfortable with the routine, I think that that might help.

    Hubby and I are trying to figure out a way to get her a trip down here. Even if I have to drive up and get her, so she just flies one way. Her husband is National Guard, so I don't know if that would qualify them for Space A flights or not. I'm not sure if it's active duty only. They would still have to get to Ft. Drum, NY though. We'll keep looking though. Something will pop up.

    After all the research and stuff that I've been doing and passing on to her, I think that she's feeling a little bit better about the diagnosis. I do too, honestly.

    Thanks again, COTH! You guys are awesome.
    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.



  11. #31
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    if all else fails, there is Greyhound! Not the nicest way to cover 900 miles, but affordable!
    Quote Originally Posted by Mozart View Post
    Personally, I think the moderate use of shock collars in training humans should be allowed.



  12. #32
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    Nov. 1, 2001
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    My oldest child has high functioning autism. It is challenging at times. But he is now an adult and doing pretty well.

    The absolute best thing I ever did was read this book,
    http://www.amazon.com/Autism-Asperge...ionship+puzzle

    It's an eay read and gives an extremely accurate portrayal of autism and has a lot of therapeutic ideas and games that really help remediate deficits that autistic kids struggle with. Plus I was actually doing something constructive for my child after years of feeling there was nothing I could do. I ended up going to Texas to study with the author and it lead me getting certified (and opening a school with a group of other parents). It is a powerful but intensive therapy.

    Being the parent of an autistic child can be very isolating for the parents, especially the mom. It is wonderful that you are willing to be there for her. Don't minimize that and keep it up.
    Last edited by nhwr; Apr. 2, 2013 at 09:40 PM.
    See those flying monkeys? They work for me.



  13. #33
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    Jan. 4, 2007
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    TX
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    Here is a web site with much information and also legal information about parents rights and how to find help:

    http://www.wrightslaw.com/info/autism.faqs.nichcy.htm



  14. #34
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    What everyone else said. From what I've seen, having a disabled child means the mother has to really, really get tough. It takes a lot of extra time and strength and willpower to find those programs and funding for the special needs, and to cope with rude people. Your friend is already isolated and poor and dominated by a jerk husband, so she's in an even worse position than most. It's great that you're going to help her and her daughter.


    1 members found this post helpful.

  15. #35
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    Mar. 4, 2010
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    In Ohio we have county level Developmental Disability boards. They are a one stop place to get all the information a parent needs, and material help as well. Don't know if they have the same thing in her state, but that's what she needs. It's good that she's been referred to Early Intervention - the child will get a case worker and I'm sure they'll be able to coordinate a lot of her care too and then point her in the right direction for after age 3. A good pediatrician will help as well.

    Does her area have 211 service? That's information and referral - you call one number and they try to point you in the right direction as far as resources.

    You are a great friend to help her do the legwork and be her advocate while she is trying to work through this new reality. It's a huge help to have someone who is not so emotionally upset deal with coordinating all the care.

    You might also call the local child protection services - not because the child is being abused, but because someone might be able to point you to resources you might have missed.

    Best of luck to everyone. Hope she is able to improve her marriage and get all the help the little one needs.



  16. #36
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    It's so important to have early intervention. You absolutely did the right thing and now you can help her by finding services to help her daughter.
    "We can judge the heart of a man by his treatment of animals." ~Immanuel Kant



  17. #37
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    Aug. 4, 2006
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    Branson, Missouri
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    Superminion, NAMI can be an excellent resource as well. NAMI has over 1000 offices and may be able to help as well. I think the idea of her being able to visit you is the best. Having caring, supportive friends can only help her, and perhaps eventually give her the courage to make smart relationship choices. Thank you for being a conscientious friend.
    "I'm an idealist. I don't know where I'm going, but I'm on my way."



  18. #38
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    Sep. 19, 2003
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    Early intervention. She needs to get this child into early intervention now. She can ask at her pediatrician's office or whatever doctor she goes to. I have a child with albinism who was born legally blind. We got home visits for physical therapy and vision therapy and she qualified for public preschool as soon as she turned 3. Totally unrelated to income.



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