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!
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!