call from coordinator

Discussion in 'General Parenting' started by Ktllc, Feb 8, 2012.

  1. Ktllc

    Ktllc New Member

    Well, as most of you know: Sweet Pea is not progressing, and I was actually wondering maybe regressing.
    Therapist actually e-mailed our coordinator in order to speed up the Speech Language Pathologist (SLP) evaluation because of Swee Pea's regression.
    No more maybe... cat is out of the bag: Rgression, the big bad word is official.
    I still can't quite believe it, husband does not even seem to be worried.
    Coordinator wanted us to drive all the way to their office for the Speech Language Pathologist (SLP) to see Sweet Pea next Monday. I actually said no: we'll wait for the next available appointment so we can do evaluation at our house. I told coordinator that I did not want to put myself in a state of emergency. 1 more month won't matter and when Sweet Pea is outside of the house, she is mute anyways. Better to see her make some sounds at home, then nothing in the office.
    Coordinator is very sweet and respected my feelings but reminded that 1 month was ok but not to wait more than that. That regression is serious...
    I know it is serious but it just seems unreal. Now, I'm wondering if I see more signs: the last couple times when I picked her up from daycare, she did not react. She only go 1x or 2x a week. And she used to run to me with open arms. The last few times: nothing... This morning, when I dropped her off she did not wave, just looked but no facial, gestures or sounds...
    On the other hand, last night she was runing away from me and giggling (did not want to be caught and undressed for her bath).
    If any of you can share their memories and experience when their very young child was diagnosis, it might help me.
    Did it feel like: no, it can't be happening. Look she is so alive and good at other things??
  2. keista

    keista New Member

    ((((HUGS)))) I think it feels that way no matter how old or what the diagnosis is.
  3. Confused

    Confused Guest

    Im so sorry Ktllc, I just wanted to stop by and give you my support. Hugs
  4. SRL

    SRL Active Member

    I'm so sorry, ktllc. :sorrysmiley:I didn't deal with this under my roof but a babysitter I once had did. At the time I was a new mom and didn't have a clue what I was seeing, except I sensed something was off when her almost two year old showed no signs of wanting to interact with me when I dropped my baby off every day. Later he was diagnosed with AS.

    I agree that you're seeing red flags and that regression is serious. I also very much understand your position of not wanting to put yourself in an emergency situation. One thought I had as I was reading your post is wondering if Sweet Pea is undergoing regression, in the future would you be kicking yourself for not jumping on this immediately? I haven't kept up with the most recent Autism research, but I think it would be worth digging in and looking to see if anything on the current treatment front looks hopeful in terms of treating regression.

    If I were in your shoes I for sure would feel like taking more time for observation, shaking my head in disbelief, burying my head in the sand, drowning my sorrows, and all that escapism stuff that comes along with dealing with those huge unwanted situations in our lives. But the fellow mom and Early Childhood moderator in me is going to gently nudge you into putting on your Warrior Mom helmet. :warriorsmiley: At the very least, I would schedule an appointment with your pediatrician for a medical look, and also to have her hearing checked ASAP if that hasn't been done recently. There are no downsides for Sweet Pea if you jump in now. There may be downsides to waiting if she's retreating into herself.

    From what I've heard, I believe regression looks different in different kids. With some kids it's gradual with ebb and flow, and others retreat from the world rapidly. I did a little searching around and found this article, along with a link to a discussion forum on the topic of regressive autism. You may be able to find more info there:
    IAN Research Findings: Regression | Autism Speaks

    I would encourage you to start taking frequent videos. Video the speech at home so you can show it to the Speech Language Pathologist (SLP) if you do an office visit. If you're looking at regression, video will help the diagnosticians.

    Hang in there and please keep us posted.:grouphug:
  5. Ktllc

    Ktllc New Member

    Ok, after debating back and forth... I just called coordinator this morning and scheduled the speech evaluation. for this coming Monday at her office.
    I talked to the daycare and asked on Sweet Pea's communication. The lady said she expresses her needs through gestures but no sounds ever come out of her mouth. One exception: screams (really loud) when an other child gets in her space.
    So basicaly she is pretty consistent with her behavior across the different environments.
    I stated not wanting to panic, but the fact is I can't rest my thoughts...
    I will keep you posted. Thank you for your support. It helps having people who understands.
  6. SRL

    SRL Active Member

    The waiting-for-answers stage is hard...I'm sure I wouldn't be able to rest my thoughts either.:consoling:

    Good for you for taking that first step.

    Gentle hugs,