The lady from MR/daughter was here today

Discussion in 'General Parenting' started by flutterbee, Dec 29, 2008.

  1. flutterbee

    flutterbee Guest

    Our appointment was at 11:00 and she got here before 10:30! I had just gotten out of the shower...wasn't even dressed! :faint:

    Anyway, she talked to difficult child a lot and looked over the neuropsychologist report and the IEP. And then she said, "I'm really confused. I've done this for 20 years and I've never come across anything like this."

    You know, I've been hearing that for 7 years now and I'm kinda getting tired of it. I remember telling difficult child's former therapist that I was really wanting to educate the school so when another kid like difficult child comes along, they'll be able to help. Her response was, "I don't think they'll ever have another kid like difficult child." *blink*

    I understand that difficult child doesn't fit into some little box. But, we need to find some services that can help her in areas that she is struggling and most of those areas are areas that MR/daughter can help.

    She does fit the criteria in that she has significant trouble in at least 3 areas that they require. But, she doesn't have a developmental disability diagnosis. So, she's going to talk to their consulting psychologist, give her the neuropsychologist report and see if she'll meet with difficult child. It sounds like she really wants to be able to get Wynter in their program; she just has to find a way for her to meet all of the eligibility requirements. At least, that's what I took from it.

    After she had been talking with difficult child a bit, she asked me if anyone had mentioned apraxia to me. They hadn't. So, I'll have to look into that.

    At 1:30 we have an appointment with the doctor for sleep medications. I'm hoping to get Seroquel, but I don't know if she'll be comfortable rx'ing it, and if she is we'll have to fight the insurance company.

    Wish me luck.
    Lasted edited by : Feb 14, 2009
  2. gcvmom

    gcvmom Here we go again!

    Hope she gets in!

    I wonder what the reservations on Seroquel would be...

    What is MR/daughter? Sorry I missed that earlier.
  3. Woofens

    Woofens New Member


    My 12 YO easy child has motor dyspraxia and verbal apraxia. Not sure if I'd be any help, but its possible. PM me if you want

  4. TerryJ2

    TerryJ2 Well-Known Member

    It's a pain when people show up early.
    Wouldn't apraxia be placed under the same general heading with-a NonVerbal Learning Disorder (NVLD) and cluttering? I'm wondering if it's just another way of saying it.
    Sounds like she was nice, and interested, and willing to help, at any rate.
    Good luck!
  5. flutterbee

    flutterbee Guest

    The reservations on the seroquel is because we went to our GP. difficult child is so volatile in this area. She wanted to go to the doctor about sleep, but when the doctor asked her if she would take medication, difficult child responded, "I don't know." :hammer: Does she expect the doctor to have fairy dust?

    In any case, she's not comfortable prescribing anything because nothing along these lines is FDA approved for children. She spent an hour talking to difficult child and I *think* we have her willing to go to a psychiatrist. She offered a sleep doctor thinking difficult child might be more willing, but told her that since her problem is in falling asleep she doesn't think there is nothing they can do because none of the sleep medications are approved for kids. After going round and round and difficult child fluctuating between hostility, apathy and shutting down, it seems we managed to convince her to see a psychiatrist. :bloodshot:

    I wanted to go to Children's Behavioral Health. While I had a hard time getting through to county mental health and was then told there was a wait of like 6 months, my GP said they told her not to long ago it was about 2 weeks. :mad::mad: But, the wait at Children's is a couple of months at least. So, I called and left another message with intake at mental helath today. We'll see how many times I have to call this time. :warrior:

    Gcvmom - MR/daughter is Mental Retardation/Developmental Disabilities Board. They offer interventions and services, educational aides, etc. How good they are varies from county to county, but ours is supposed to be really good.
    Lasted edited by : Feb 14, 2009
  6. Wiped Out

    Wiped Out Well-Known Member Staff Member

    I hope that they are able to get her services. I also hope you are able to get her in to see a psychiatrist soon! Hugs as I know how frustrating this must be.
  7. susiestar

    susiestar Roll With It

    I am glad the lady from MR/daughter seems willing to help. Is it at ALL possible Wynter fits on the Autism spectrum somewhere? Maybe something like Asperger's-not otherwise specified because she isn't' a clear Aspie but has a number of the symptoms? I am just thinking of some way to get her into MR/daughter or whatever has programs to help her. (Personally they could have said Wiz was pregnant if it meant he got social skills training from someone who understood what manners were!). Just trying to think of ways to interpret what she has to fit what boxes they need to qualify her.

    I hate that they keep telling you no child is like her. She is NOT all alone. Unique? yes. Individual? yes. The Only One? Nope. This just seems so isolating, for Wynter and for you.

    anyway, I am pulling for you.
  8. tiredmommy

    tiredmommy Site Moderator

    Heather, don't be surprised if her diagnosis gets "tweaked" in the near future to something on the autistic spectrum if it will get her the services she requires.
  9. flutterbee

    flutterbee Guest

    I'm hoping that her diagnosis does get tweaked. I've been thinking Autism Spectrum Disorders (ASD) spectrum for a few years. I was hoping the neuropsychologist evaluation would have given more. It gave a lot, but then not at the same time. If that makes any sense.

    If she had an NonVerbal Learning Disorder (NVLD) diagnosis, it would get her services. But, she has 'characteristics'. She has 'characteristics' of a lot of things and no one can really seem to nail it down. Personally, I think she's on the spectrum.

    To be honest, I just want the services in the areas that I see on a daily basis that she struggles with. It's so frustrating how hard it is to get that. Why is it so hard to say, we need help with X,Y,Z and they can't seem to do that without a diagnosis? We're not talking medications, just interventions and therapies. One of the biggest reasons that traditional therapy hasn't worked is because she doesn't know how to explain herself. She has this amazing vocabulary, but she doesn't have 'feeling words' as one therapist put it. So, if she can't recognize it and she can't explain it, how is regular therapy going to help?

    Ok. Just venting.

    We were talking tonight and I said I just needed some encouragement. difficult child said she doesn't know how to do that. And she really doesn't. I explained to her what kind of things you could say to someone to show encouragment. Then she told me that she can say, "Thank you", and "I'm sorry", and that when she feels bad for people, she doesn't know how to show it.
    Lasted edited by : Feb 14, 2009
  10. flutterbee

    flutterbee Guest lost in my tangent.

    Thank you for the support. I feel like she's going to try to make this work. If not, I will continue pursuing the avenues I feel are most appropriate. I know our GP will refer us to a developmental pediatrician or another neuropsychologist if I ask for it. She spent an hour with difficult child today. She knows how it is.

    Thanks again. I need the good vibes. :flowers:
    Lasted edited by : Feb 14, 2009
  11. klmno

    klmno Active Member

    Heather, I just wanted to send support and let you know I'm thinking of you. I understand the frustration of just needing some help in a few areas and hitting a wall that we have to knock down in order to get them. I wish someone would overhaul this system!!
  12. tiredmommy

    tiredmommy Site Moderator

    Heather, she sounds a bit like my Duckie. Duckie isn't actually impaired in any area to the point of a diagnosis, yet she has struggles and issues across the board. It ends up affecting her globally. So no diagnosis, but a child with problems. :( I'm really happy Duckie is seeing the Occupational Therapist (OT) at school finally; Mrs F has a knack for understanding her quirks and how they impact her.