Discussion in 'General Parenting' started by Ktllc, Jan 14, 2012.

  1. Ktllc

    Ktllc New Member

    Sweet Pea's therapy was going real last Friday. I usually sit there and watch them so I can learn all the different etchniques and games and apply them daily during the rest of the week.
    Sweet Pea is always trying real hard and full of joy. Therapist introduced a new toy (some kind of litle microphne that magnify voice and sounds when you talk in it). Sweet Pea managed to produce 2 sounds (A and OO) and also blew in it quite a bit. I smiled and told therapist that she will blow a lot in an attempt to produce sound. Therapist made a note of it as she thought it was an interesting clue.
    After that, therapist explained that she might make a referral for an actual speech evaluation as soon as she turn 18months and not wait 24months, unless we start seeing some progress of course. She said that in rare cases, an early referral is necessary when the kids are stalling despite therapy.
    So I guess we have another 2 months until plan B...
    I am not sure what kind of other therapy techniques can be used?
  2. buddy

    buddy New Member

  3. Ktllc

    Ktllc New Member

    I read the article, and it actually might be right on. Her understanding seems to really be responding to therapy and her muscles are quite strong (been using a straw since the age of 10 months or so).
    But from what I understand it would be hard to diagnosis since she barely has any speech. I suppose, that's why it is so important to have good professionals to do the evaluation.
    Buddy, do you think she is too young to start looking into alternative comunication systems? Or would that be confusing since we do sign language already?
    Poor baby girl cried so bad last night because nobody knew what she wanted before bedtime. We tried cuddling, bottle, milk in sippy, cookie, other foods, etc.. Until I looked at her highchair and realized she did not have water with her dinner! She was sooo thirsty for water. She was signing "milk" but actually meant water (we have not taught her the sign for water yet). husband and I felt bad...
  4. buddy

    buddy New Member

    First, maybe teach her the sign for drink, smile. Kind of like more and want an please and no...sometimes a more general word can give her access to more. alternative communication systems?? you ARE doing an alternative communication system in sign language. the obvious advantage being no loss of electricity, portable (you never lose your hands) and you and hubby are on board. The disadvantage to signing when not in an deaf community is that she may have few people who understand her. At her age, being receptive to signs, I would stick with it and not add another system. I would pair her signs as you are doing with words ... little sounds etc... just single words right now because you are hoping she will imitate and longer sentences she wont know what to pick to try to say. (of course when just talking to her for a direction etc... use normal length sentences for a one year old)

    As far as her frustration, that really does happen with kids her age. I think a problem YOU have is that she seems quite bright and has such good receptive language and KNOWS what she wants to say so she may seem more frustrated than your other kids have been??? But this is the classic age to have kids be frustrated because what they want does not match their language development yet.

    The way we get kids to use alternative/electronic communication systems is to start with cause and effect toys like you push something to make something else happen, and luckily we have computers and ipads etc. these days to have them touch things and make them happen. They have those drawing pads for computers etc if you dont have ipads or other types of touch screens. There are baby computer programs (you probably have these) where hitting any key on the key board will make bubbles come out or catch letters and sing the abc's etc. These help lead them into that in the future if by 2 she is really not saying any words. But I am biased to sign language if the family is really willing to use it because the unlimited vocabulary is an amazing advantage and you can always pair it with electronics anyway. I would not write off spoken language yet. I have worked with many many many kids who at 3 barely can talk and by 4 they are (as we were saying before) not easy to shut up.

    Just keep up the language growth. THAT is the most important thing that will affect her overall development in all areas. You are clearly a pro at that and she already shows she is probably developing within normal range there already.

    Just an informal opinion not being there... hope that helps... I know there is another Speech Language Pathologist (SLP) here somewhere.... feel free to throw in any opposing opinions. this just happens to be my chosen area when I was in grad school and was working for a long time.... I love alternative and augmentative communication systems but of course we always hope we dont have to really go there for a child. It is far far more efficient to communicate through speech when possible (not talking about people who are deaf/hard of hearing here...that is a whole nother issue).

    She is not even 18 months yet, so not time to panic but given her issues and sibs it is good to pay very close attention. You are doing everything right, in my humble opinion.
  5. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    At only eighteen months, not sure why they would go there yet. The fact that she regressed is a red flag though (in my opinion). My son had Pervasive Developmental Disorder (PDD)-not otherwise specified (a form of autism) and his receptive speech was great and he could even drag us around and point, but he was still on the spectrum. Are you sure it's not that? It's weird to suddenly lose speech when you had it once. The first doctors who see our kids are not always correct.

    I would see if she developed speech again and skip anything else.
  6. buddy

    buddy New Member

    The thing is she is not just dragging and pointing, she is using language...words in sign. The language issues in autism are not "speech" it is any loss of words/communication. And she has not lost other skills. She continues to develop in all other areas from what has been said. She is also imitating very well... just can't do it well with the speech muscles. But she tries. She really sounds like she only had a few sounds/words and then when she got to a level of wanting to say or do more then it all went away. That is worrisome but in the sense it could be more of a motor thing. Sure it can still be on the spectrum given the sibs history but she sounds like she is showing very few other signs... but again, we are not there so ???
  7. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    My son did do sign language. I would just keep an eye out for Autism Spectrum Disorders (ASD). Can't hurt. Sonic developed in other ways too. Not quite sure what you mean by develop. He did learn to talk and walk and jump and run and sing and even learned to read at two...just thought it was worth mentioning again because in my opinion it's bound to come up again from some professional. I really didn't remember the history or that it was in the family. That ups the odds a bit...guess we'll see. She is awfully young.

    Anyhow, just my worthless .02 :)
  8. buddy

    buddy New Member

    what I meant was from an earlier conversation about the loss of development... the speech sounds that she had shown some of early on have stopped but the rest has not. there is no loss of desire for communication at all. (right? That is what I am hearing??) no fixation with anything, no loss of other skills that had developed, no sensory issues, no feeding issues, etc. (again, right??? am I hearing you right about that??) and when she has meltdowns it is not over a change or texture or those kinds of things, it seems to be more typical baby things AND actually not getting what she is desperately TRYING to communicate, rather than kids with autism who tend to have that same response because the thing they want is not magically showing up for them. Or because they can't use another body to get it the way they want.

    Early in her concern on this board, there was a question about the form of autism which is a much smaller group of autism where at an older age (usually more around 3-4ish) there is a stopping and regressing of development and communication is the most obvious but it really hits most areas in some way. It usually is quite severe and more ominous than the other more common forms of autism (of course Rett's is much worse as it is a progressive disease). All along it has seemed to me that ktllc is pretty open to making sure about autism, and continuing to be on guard in case it is that, I would for sure do that too.... Just in this case, it so far does not add up but she has said it before...and she is doing what one would do anyway if there was autism. there really are many reasons for slow speech and language development. All we can do is pay very close attention so Sweet Pea seems to be in really good hands with tons of board aunties who really care. does that makes sense? (I would never rule in or out anything... I am not there, just offering many ideas to work it at all angles. Huge difference in using signs for labels and really using it to communicate, request, express, etc at the appropriate level of language for that age. Seems like she is doing that as far as cyber world can say of course....)
  9. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    The regression is usually around the time when kids get their MMR shot (causing the false belief in some that the shot itself causes t he regression). That, I believe, is around 18 months (or it used to be. Been a long time since my kids had shots!).
    My son was not delayed except in verbal communication. I'd still want to keep an eye out for Autism Spectrum Disorders (ASD) if t his were my child. No two Autism Spectrum Disorders (ASD) kids are alike. Could be something else, but worth keeping in the back of the mind too :) At least, I think so.

    I have one more in my opinion worthwhile suggestion. I would get a genetics screening, which is just a blood test. There could be some genetic disorder causing problems with her muscles. I have no idea what, but Sonic got a genetics screening, which came out negative. It was just one more way to find out what was and wasn't wrong with him.
  10. buddy

    buddy New Member

    That is for classic autism. I was talking about disintegrative form of autism. It was brought up earlier.
  11. Ktllc

    Ktllc New Member

    Wow, a lot has ben discussed WM and Buddy!
    Thanks for all your input.
    I do understand she is little yet. But like you both suggested: I keep my mind open.
    I do follow her therapy plan and the advice they give but going to this forum helps me make sure that those advice are good and indeed worth following.
    I understand what the alternative communications systems are a bit better. And signs language seems to be the best fit for now. Her family is her world and we are ALL learning the signs, even the boys! And outside of the house, I'm usually around to translate anyway.
    We've had some funny moments actually: she would sign to people and they would think she's just playing with her hands. They would then "play" along and she would start frowning and keep signing. Then I would explain what she does/says and they would go "oops" feeling a little (just a little) stupid in front of the baby. lol
    Except through this forum, I have never seen any autistic child. My son have been described as having autistic traits, but that's all. So I suppose, I'll have to trust the professionals on that one. I need to decide what sysmptoms are bothersome for our family and which one are not. Just to explain what I mean: the fact that V likes to sort and position his toys in a row doesn't bother me whatsoever. The fact that V does give people a weird look and doesn't answer any greetings when he first sees them (even familiar people) is an issue for me and we patiently work on it.
    I want to make sure we do everything we can.
    For Sweet Pea, I am not looking for a "why" yet. Wether it is genetic, coordination or simple delay I don't want to worry about that yet as long as the therapy covers all basis.
    Labels come handy when a child goes in the outside world (mainly school), until then I really don't have to explain anything to anyone. People already ask me *why* she's not talking. My answer is a smile and "it could be one of million reasons" but she is haapy and bright. She will be just fine.
    I ask questions on the forum to educate myself, not feed any worries. I'd like to say I'm more conscious of the situation than I am worried about it.
  12. buddy

    buddy New Member

    Excellent mom. I figured that was what you do since you have said you look out for it with V too. It is really all we can do, in the end label or not as long as we do the right therapies and are consistent. Especially when they are little we are their primary therapists. I love that she is so communicative. That is a big difference between her and V. Yes she (for now) has speech/artic issues but she is really not showing language/social communication issues.

    by the way, I hope you don't mind we were discussing that! I think it is a wonderful thing about this forum, like an IEP team SHOULD run... we all share our perspectives and then YOU, the expert can see what applies. We really were agreeing anyway, as you pointed out.... the main thing is what you already do, keep an eye out and open for all of it. She is so little and really not that far off the norm yet. Many would not even be working on this like you are but you see her individual frustration and abilities and are working on it with her. It is a beautiful thing to hear about, she is a lucky girl and you are lucky to have her.

    About V not greeting, acknowledging people... it can seem rude but I learned to let it go as there were so many other issues (in our case that is). But of course we still worked on it during skill building and do you know one of the most stand out moments of my summer last year??? We spent nearly every day at our pool. One day a boy had a visitor join the kids and Q was standing by the gate. I looked up just as I saw him reach out his hand, look the kid in the face and ask his name... honestly they SHOOK HANDS and Q actually greeted him like a MAN not even a kid which would have been fine too!

    He has had so much therapy to work on those things but in the end it is when we started the horseback riding that something shifted....I wonder if it helps him some how, some way, integrate the skills he is learning into real life. It is some kind of bridge...maybe simply due to the stress relief. But it has to be more than that because sometimes the riding is stressful too.

    I wish V could get treatment with Autism Spectrum Disorders (ASD) folks, I wonder if he at least should have a Pervasive Developmental Disorder (PDD)-not otherwise specified diagnosis so you can get more supports for him and he can be understood more at school. I hate that they deny you so much.
  13. richardluthar

    richardluthar New Member

    We was meant was from an earlier conversation about the loss of development of stalling, just can't do it well with the speech muscles. My chosen area when I was in augmentative communication systems for a long time, THAT is the most important thing that will affect her overall development in all areas.