update for us

Discussion in 'General Parenting' started by quietplz, Jan 10, 2010.

  1. quietplz

    quietplz New Member

    Hello all. I wanted to write a quick update on how my little one is doing.

    She has play therapy Mon. and Tues. for an hour each and speech on Wed. and Thurs. for an hour each. These seem to be going well. Her receptive speech has improved immensely, although still behind by far for her age. She makes a small handful of word-like sounds and many animal sounds, which she hadn't done before. She does have an odd intonation to the word-sounds though. Her signs are increasing, even though she still doesn't usually make them to communicate to a person just in the person's general area. She will once in a while look at a person rather than near them, but it is a creepy dead stare so I don't know if that is good or what. On the other hand, her sensory differences have gotten increasingly noticeable and repetitive behaviours have also increased. She tippy toe walks more and requires routines more than ever. She is also fearful of blonde haired people.

    She recently had an occupational therapist evaluate her for the sensory differences we had all noticed. She was so upset by the break in her routine that she screamed until she literally vomited all over the Occupational Therapist (OT). Before that though I did get her to cooperate with some of what the Occupational Therapist (OT) wanted. The Occupational Therapist (OT) wants to see her weekly for an hour and said that she obviously had some sort of sensory problem. I guess I will be taught more about this later, as she left shortly there after to get cleaned up with out saying too much more.

    The case manager called and said that they were going to make a weighted vest available to the baby, offered book suggestions, told us to get a therapy ball, and look into something called therapudic horse back riding.

    Now to the questions. None of the people who work with the baby have said, this is what we think is going on to make all the symptoms happen even though I have asked them each. I also asked if they could recommend any type of doctor or specialist who could help with this and they all said no, no one can. Is this true? No one can find out the why of this kind of thing? As much as I understand labels are not the end all, be all it does get old to just have to say I dunno when people ask what is wrong with her or why she acts funny. Plus it is easier to research when you have at least a best guess.

    What do you say when people are mean? The baby is only 22 months and doesn't understand a lot yet, but some day she will. We were out shopping and she saw a ball. Immediately she started saying "Ba" repeatedly and loudly with her odd upward inflected intonation while making the sign for ball which looks sort of like flapping when she is very excited as she was. I praised her for commenting on it and said Ball while making the sign accurately. A lady behind me looked disgusted and asked me if she was retarded or something, and then walked away making a face. Why would some one do that?

    Don't you ever get tired of it all? Our big girl is almost 7 and has been diagnosis as adhd and odd. We home school her because school wasn't a good fit for due to being very impulsive, hyper, and loud, as well as being well above average intelligence( we had her tested, not trying to brag). So I am at home with two special and very different kids all day, every day. When ever we go any where I always worry about the kids melting down, tearing things up, or being judged. When we do things I have to keep in mind sensory requirements for both, schedules, and time frames. When things or people come in to our lives, they have to be evaluated against what the kids need. I know this is a whine and that so many people have it so much worse than I, but sometimes I just want to do something with out thinking it through thirty ways to next Wednesday. This is normal as long as it is occasional, right?

    Sorry for whining, I just haven't any one who has any idea what this house hold is like to express frustration to - except you all. Thank you if you got this far!
  2. smallworld

    smallworld Moderator

    Obviously we're not doctors and can't diagnose over the internet, but it sounds to me as if your little one is on the autism spectrum. When you read about autism spectrum disorders, does that ring a bell with you, too?

    You might want to call your local chapter of the Autism Society and find out which doctors are best for treating kiddos in your area. I would wager you're looking for a developmental pediatrician.

    Here's a link to the Autism Society website:

  3. smallworld

    smallworld Moderator

    There's also a Society for Developmental and Behavioral Pediatricians.

    Here's the link:
  4. tictoc

    tictoc New Member

    Dealing with the outside world can be so hard. I know exactly what you mean when you say,

    "When things or people come in to our lives, they have to be evaluated against what the kids need."

    That is hard, but it also makes you a good parent. I'm having one of those days when I have to remind myself of that, having just had to 'drop' a friend who just wasn't working out with difficult child.

    It sounds like you are getting some good interventions in place for your daughter. I would suggest you look into a special needs or autism support group for you. Good luck.
  5. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    I agree that it sounds like a form of autism. I'm amazed nobody diagnosed it.
  6. quietplz

    quietplz New Member

    Hi, all, and thank you for your responses.

    All the people who work with the baby have said that if she had some form of autism that therapy would not be able to teach her so many signs, nor to train her to interact with others and that she wouldn't be as friendly as she is on her good days. A re evaluation with the same psychologist who was here for the initial evaluation is planned for April and I was told not to bring her to a doctor before then because any label now would be incorrect because she is too little.

    Are they feeding me a line?
  7. jasz1971

    jasz1971 New Member

    I'm a preschool special education teacher. Honestly, I would not wait to make an appointment with a developmental pediatrician. There is often a long wait to get an appointment...where I live 6 months. From what you described, this does sound like an autism spectrum disorder. Like everything no two kids who have been diagnosed with Autism are alike. I don't agree with your therapists...the sooner the better to get all the help that you need. I have worked with kids as young as two that have been diagnosed with Autism and yes they were able to learn to communicate through sign language/words. It sounds like you have a good program in place for your daughter but there are treatments/approaches that are used with children who have autism spectrum disorders. Hang in there...you are doing a great job.