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Thread: Do you ever feel like no one is listening?

  1. #1
    danellsar is offline INCIIDer - A Community Creator
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    Default Do you ever feel like no one is listening?

    I feel this way all the time about my dd. She's 13. The only services we've been able to get for her so far are counseling and psychiatric. No OT or PT, though she's needed it since at least age 5. The school district won't even call me back, and her ped didn't believe that she'd get any dx, certainly not a spectrum dx. Even after she DID get the Asperger's dx, which fits very well with her issues, her ped still says that the psychiatrist is making a mountain out of a mole hill.

    I feel like no one listens to me. They see that she's very bright, way above average intelligence (GATE), and so she couldn't possibly need any help. When I do get someone to even consider her case, all I hear is how there are SO many kids who are SO much more severe than she is and need the services SO much more.

    Next week we have an intake screening for Social Skills groups through her psychiatrist. When they called, the above "so many kids so few services" was what they quoted to me to make sure I knew that she might NOT qualify.

    So how do I get her the help she needs? How do I even find the people who might provide the services that would help her become a more self confident, independent person? How do I find the resources to help teach her how to behave socially so that she doesn't stick out like a sore thumb?

    I feel like I am totally alone in this journey, like there's no one listening, no one willing to help. How do I find someone somewhere who will help me advocate for my child's needs?

    I am so envious of those of you who have schools that will actually listen and provide services, because mine sure don't.
    Ellen

  2. #2
    Join Date
    May 2006
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    Default Oh sister, I am right there with you a lot of the time

    Quite honestly, with our higher functioning kids, we have to push harder and look like we are crazy much more often!!
    I can't even tell you how many times I have heard the words, "A lot of kids do that" or "A lot of kids don't do that yet." As moms WE KNOW it is different. It drives me absolutely crazy.
    My concern is not for those kids who need services more. My concern is for my own kid!
    Do I have an answer? NO!! Sorry. I just keep pushing.
    LM







    Quote Originally Posted by danellsar
    I feel this way all the time about my dd. She's 13. The only services we've been able to get for her so far are counseling and psychiatric. No OT or PT, though she's needed it since at least age 5. The school district won't even call me back, and her ped didn't believe that she'd get any dx, certainly not a spectrum dx. Even after she DID get the Asperger's dx, which fits very well with her issues, her ped still says that the psychiatrist is making a mountain out of a mole hill.

    I feel like no one listens to me. They see that she's very bright, way above average intelligence (GATE), and so she couldn't possibly need any help. When I do get someone to even consider her case, all I hear is how there are SO many kids who are SO much more severe than she is and need the services SO much more.

    Next week we have an intake screening for Social Skills groups through her psychiatrist. When they called, the above "so many kids so few services" was what they quoted to me to make sure I knew that she might NOT qualify.

    So how do I get her the help she needs? How do I even find the people who might provide the services that would help her become a more self confident, independent person? How do I find the resources to help teach her how to behave socially so that she doesn't stick out like a sore thumb?

    I feel like I am totally alone in this journey, like there's no one listening, no one willing to help. How do I find someone somewhere who will help me advocate for my child's needs?

    I am so envious of those of you who have schools that will actually listen and provide services, because mine sure don't.
    Ellen

  3. #3
    sugarsue is offline INCIIDer - A Community Creator
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    Default

    I'm giving out hugs today. That is so frustrating feeling like you are not being heard and not getting the help that you and dd need. I hope that you find the right support person who can help you.

    Susan

  4. #4
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    Default

    Yes, like, all the time!

    I totally get what you mean. For us it's partly because ds is high functioning, but also because there were obvious explanations for the disabilities he does have -- so I was the only one digging for answers. It's SO frustrating and I often feel so alone. It's very common for me to break down in frustration saying "I am not qualified to handle this by myself!!! Why isn't anyone helping?!?!?!" It was like that when we were looking for the mito diagnosis, for example.

    This year the school got into the act too. We felt like we were in the "Twilight Zone" when we would talk to ds's classroom teacher. We would volunteer in the classroom and see ds totally disengaged, or hear the other kids harassing him. When we'd ask the teacher she'd say "he's doing great! He participates in class and has friends and is just like the other kids." And we'd say "but we just saw X, and Y, and Z," and she'd say that it didn't happen. Aaargh!

    HUGS!

    Lisa

  5. #5
    jeninnc is offline INCIIDer - A Community Creator
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    Default

    Yes.

    Hugs - I wish things were easier for you.

    We were denied all services for Lacey (older dd). It is so frustrating because I see her struggle and she could be helped so easily.

    I had it so "easy" with Ellie because she has that magic diagnosis of autism - who knew I would ever be grateful for that.

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