Made a referral for Sweet Pea

Discussion in 'General Parenting' started by Ktllc, Mar 25, 2013.

  1. Ktllc

    Ktllc New Member

    I finally called this morning and made a referral to the Autism Spectrum Disorders (ASD) center.
    The weekend was extremely tough with her. She has had tantrum after tantrum. Her longest one lasted 6 hours. yuck.
    It really sounds extreme when I type it up... And no, she is not sick or anything. It is not a dramatic change from the usual either.
    I don't know why or how I could miss this, but I realized just this morning that she tantrums during transitions: daycare to home, play to dinner time, family time to Dad goes to work, sleep to waking up, awake to night time, etc... Plus the million other things I have not conceptualized yet.
    Her speech is still impaired and we started to work on transitioning her to preschool program when she turn 3 in 6 months. She will be tested by school in May but I'm not waiting on much. I'm just pretty much certain she will receive speech, her delay is so obvious.
    She has not had speech in a month because of insurance issues (just missing paperwork) and she is regressing. I thought she would at least maintain, not regress. It just shows how fragile her progress is.
    I've completed that questionnaire from childbrain, the Pervasive Developmental Disorder (PDD) assessment (I know it experimental, but it was right on for V). And, yep: she scores mild Pervasive Developmental Disorder (PDD) like V.
    V's counselor told me she was not too young to be tested, even if she is borderline like V. She said that if her needs are intense enough they will not let me down even if they can't diagnosis her yet. She mentioned some informal sessions to help toddlers and their family.
    So after all this, I thought "why not. let's go with the referral". She will also be put on a priority list because she is so young, so the waiting time should not be as long as it was for V (it was 8 months for V).
    Guess what I'm doing next: a picture schedule for Sweet Pea! Yeah... I'm living on a different planet. And you guys are the only who share this weird planet with me. What happened to the joy of parenting? Sure I love her to pieces, but why do my kids have to be so difficult?
    It sure makes you wonder if it's not me... but I don't think it is. Just hard to wrap your head around it.
    Here is my little update.
    May the saga continue.
  2. buddy

    buddy New Member

    I think that's a smart idea. She is more involved than v in some communication ways. I wonder, if she is regressing, if your insurance would pay for ABA or other intensive autism therapy.

    Once again, thank God she has you.
  3. Ktllc

    Ktllc New Member

    I am really not familiar with ABA... here in NC, the TEACCH methods is mostly used (the "the Autism Spectrum Disorders (ASD) center" I always talk about created TEACCH).
    What I find: Sweet Pea's language shows lots of progress when she is in a good place, when things shift she almost completely lose all language.
    For example, tis morning was good before daycare. She was communicating in single words and in a spontenous manner. Really nice to hear.
    And then, poof! Gone when she is in one of her moods. Resorts to whining, grunting and other sounds (ex: "ah, ah, ah").
    Just talked with my mother after telling my father about the referral yesterday. She said it was the right move. She said that something is off with Sweet Pea, I'm NOT seeing things where there is none. It's nice to be reassured that I am not going nuts and seeing Autism Spectrum Disorders (ASD) everywhere...
  4. buddy

    buddy New Member

    I am not a huge supporter of one method over another. I truly believe that it takes an individual approach. ABA and TEACCH can work hand in hand. I was just wondering about more specific autism training. In our early childhood class for kids on the spectrum (the one I taught in not the one Q was in) we used PECS even with the verbal kids. Consistent use helped them organize their language for requesting and commenting. I saw kids who were essentially non verbal, maybe wiht a little echolalia asking in up to four word sentences for items, often even using my name to call my attention before asking. PECS can be very powerful and I have used that a lot.

    In Quin's private program, paid for by insurance (he went there in the morning and then to the school class in the afternoon from preschool through kindergarten) they used more picture support, not actual PECS for communication. It was a very eclectic program.

    With her delay I was just wondering if she would get into a program easier than what happened with V....
  5. Malika

    Malika Well-Known Member

    If there is a problem, the earlier the intervention the better, as you absolutely know. Have you mentioned that your husband has some slightly Autism Spectrum Disorders (ASD) traits or some history of it in his family? DOES Autism Spectrum Disorders (ASD) have any kind of genetic/inheritance base (most things seem to)? Everything you are now doing for V may be a kind of path laid down for Sweet Pea, making it easier... or maybe not, maybe she's not got the same issues. Time will reveal.
    How is V, by the way??
  6. InsaneCdn

    InsaneCdn Well-Known Member

    Yes, Malika. Spectrum stuff, including near-spectrum (like ADHD) has some known risk factors, and one of those is having others in the extended family who have it, and another is having a parent or grandparent who is an engineer, scientist, mathematician, or in high-tech. (probably because those fields of work tend to be where you find lots of spectumish people...)
  7. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    If you have a child on the spectrum, you have a one in twenty chance of having another one on the spectrum.
  8. Ktllc

    Ktllc New Member

    I think we have been able to survive Sweet Pea because we've all learned so much with V. I have known for a long time that there were more issues than just the obvious speech delay.
    But I also see lots of strength in her. Strength that would be against an Autism Spectrum Disorders (ASD) diagnosis. But looking back, V has/had the same kind of strength and he still received the Autism Spectrum Disorders (ASD) diagnosis... so no, definitely not clear cut but as you all know: been there done that with V.
    husband does indeed have quite a few Autism Spectrum Disorders (ASD) traits. I would like him to be tested just because I'm curious, but he is not really on board. He said he will if I really want him too. But I don't want to push him in doing something he does not want to... I was having a converstion with a friend about Autism Spectrum Disorders (ASD) and being self centered. And she had a comment "it might have been easier for you to understand because of your husband having so many traits". She does not really know husband and was just assuming it was one of husband Autism Spectrum Disorders (ASD) traits to be self centered. I kind of paused... I had never thought about it because husband happens to be a very helpful person, always ready to help and rescue people. BUT, if he thinks something needs to be one way it will be hard for him to change his mind. So I usually let him decide on a lot of stuff that simply don't matter to me: color of the walls, angle of the stairs on the deck we built, etc... you get the idea. He also has a hard time remembering that what he likes is not always what I like (ex: "I want to buy X to make you happy", me:"Honey, you like X, not me" and he will just keep on bringing it up). So yes: husband does have a lot of Autism Spectrum Disorders (ASD) traits.
    Malika, thanks for asking about V: he is doing really good right now. He is the most stable he has ever been. We use picture schedules on a more consistant basis and it helps a lot. School wise, he is being tested for an IEP. When I have the results, I will make a post. It will be end of April...
    It is hard to deal with special need kiddos within the same household. But when I have a chance to rest a bit, I realize that my kids also have a lot positive going on for them.
    Whatever is going with Sweet Pea, I believe I am better armed today than I was with V.
    As far as TEACCH or ABA services, I will need a diagnosis before anything happens. I'm not even sure wether intensive therapy would be needed. But more family guidance towards her specific challenges. Not another sticker/reward system like one of her therapist suggested (therapist is good with her, just don't understand the level of her tantrums since she has never seen them). I have video taped Sweet Pea while tantruming and showed her. Everything she suggested, I do already... I need more skilled help. Not just common sense and good parenting protocols.