I've been horrible about keeping up this blog, but wanted to write a couple of things. The other day, Kasarah told me that she was watching Gavin play with his toy triceratops dinosaur, and she heard him say "Triceratops, triceratops." I didn't know he knew what kind of dinosaur it was, but was glad he knew it. But then she said she heard him say "Kasarahtops", and repeated it a couple of times, so said "Triceratops, Kasarahtops." She just thought it was cute, so wanted to make sure I knew it. I thought it was great because he was playing with words, rhyming!
We took him to the Mall of America yesterday, and picked up Kasarah on the way there. They had a pretty good time, and she even went on the Wonder Pets flyboat ride with him. She told Terry that she thought he did really well there, as most of the kids she worked with wouldn't even have been able to go inside the mall because of it being so loud, and there being so many people, etc. She told Terry that she thought Gavin was really smart, which, of course, we love hearing!
Btw, Gavin said to me the other day, "Zebra starts with 'Z." So I asked him what "monkey" started with, and made the appropriate sound, and he said "M." We asked him another couple of words today, what letter they started with, and he was able to tell us the correct answer. I can't remember what words, but he got them!
A couple of weeks ago he impressed me by being able to count up to 100 with minimal help (I just told him the 10s, and let him count the numbers between.)
On a funnier note, today he saw a picture of a boy throwing a football. He said "throwing." So I said "what do you throw?" Gavin responded "eggs." Great! My kid's starting early!
Yesterday, he pinched Terry, so Terry said "No pinching", and Gavin repeated it. Then Terry said "So why did you?" Gavin replied "Because Gavin pinched Daddy." So he doesn't really understand the concept of why you do something, but he did seem to know that when someone asks "why", the answer starts with "because." That's getting there!
Sunday, April 3, 2011
Friday, March 4, 2011
best compliment about our kid
I got the best compliment possible the other day from Gavin's ABA therapist (Kasarah.) She said "He just makes me so happy." She absolutely loves working with him and loves hearing him laugh, and has mentioned how easily motivated he is. I just thought hearing that your child makes someone that happy was one of the best compliments you could ever get concerning your child. His feeding therapist told me that Gavin and the other kid (Travis) just make her day. I'm glad our son is such a positive light for people!
I haven't written anything for a really long time, and haven't even mentioned who Kasarah is, so will do that later.
I haven't written anything for a really long time, and haven't even mentioned who Kasarah is, so will do that later.
Wednesday, December 1, 2010
I got a call from the school's occupational therapist today, to set up an appointment. After talking, she asked me if I was working on getting the letter that E needed for the school (his Early Intervention teacher.) I told her that yes, I was working on it. Thing is, I don't think I should NEED to get the letter. This is the deal--in September the school did their 3 year assessment testing. The results indicated that Gavin qualifies for special education services (from the school) for the next 3 years. Up until the age of 3, services are provided in the home. After 3 years old, they are provided in school. EXCEPT, that I wasn't planning on putting him in school at this time. Yes, we did attend Early Childhood classes this fall, but the school said for him to receive services through them, he needs to attend preschool when he turns 3 in a few weeks (UNLESS we have a letter from his doctor specifying that he is not to attend school at this time.)
I wasn't going to put him in preschool at this time, for several reasons. One of which is his health--no way in hell was I going to start him going to school in the middle of the winter, when he got sick last fall, and it laid him up for 3 months straight. Every time he gets sick (cold/flu, whatever), it's really rough on him. It scars the lungs every time, and considering he already has scarring of his lungs, it makes it even harder for him to recover. So the thing you do with kids with lung disease, is avoid them getting sick for as long as possible, to allow their lungs to develop enough so that the illness doesn't really do them in, and make their lungs worse.
So anyway, I wasn't going to put him in preschool at this time, and only one of the reasons is his health. Another, is that I just don't think he's ready for school at this time. And what I'm ticked off at right now, is that the school will not provide services if I choose not to enroll Gavin in preschool in the spring semester. And yet, I shouldn't HAVE to. So we're pretty much being forced into putting him in preschool when we don't want to. Well, if we want him to get services through the school anyway. We're being backed into a corner--not get services that the school thinks he needs, or risk him getting sick and all that entails. So far, he hasn't been hospitalized when he got sick, but that's because we already have all the stuff like oxygen, nebulizer and sat monitor at home anyway. Next time, we may not be so lucky.
It just feels like I'm always having to justify what we're doing with OUR child. So why aren't we allowed to just do what we think is right for our son?
I wasn't going to put him in preschool at this time, for several reasons. One of which is his health--no way in hell was I going to start him going to school in the middle of the winter, when he got sick last fall, and it laid him up for 3 months straight. Every time he gets sick (cold/flu, whatever), it's really rough on him. It scars the lungs every time, and considering he already has scarring of his lungs, it makes it even harder for him to recover. So the thing you do with kids with lung disease, is avoid them getting sick for as long as possible, to allow their lungs to develop enough so that the illness doesn't really do them in, and make their lungs worse.
So anyway, I wasn't going to put him in preschool at this time, and only one of the reasons is his health. Another, is that I just don't think he's ready for school at this time. And what I'm ticked off at right now, is that the school will not provide services if I choose not to enroll Gavin in preschool in the spring semester. And yet, I shouldn't HAVE to. So we're pretty much being forced into putting him in preschool when we don't want to. Well, if we want him to get services through the school anyway. We're being backed into a corner--not get services that the school thinks he needs, or risk him getting sick and all that entails. So far, he hasn't been hospitalized when he got sick, but that's because we already have all the stuff like oxygen, nebulizer and sat monitor at home anyway. Next time, we may not be so lucky.
It just feels like I'm always having to justify what we're doing with OUR child. So why aren't we allowed to just do what we think is right for our son?
Wednesday, November 17, 2010
My little parrot
I'm feeling irritated today. It was a dreary, cold day, which then also gave me a migraine. So it wasn't great. Although, I did get rid of my migraine with medicine, so things were better. But then Gavin really was doing a lot of "parroting" today. I asked him "do you have to pee? Yes or no." So he said "have to pee." So I thought, Good, then go ahead (since I had him on the toilet already.) But then he added "yes or no" instead of answering the question (So he repeated "have to pee, yes or no." I thought maybe he was just tired or stressed or something. Although the speech therapist (L) said he did a good job there today.
Tonight, he was in the laundry room and knocked over our bowl of coins (that we take from the laundry.) He tried several times to pick them up and put the bowl back up on the dryer, but kept spilling the bowl when he'd try to put the bowl back. So Terry went in to check on him. He said Gavin was sitting on the floor saying "Problem. Problem. If you have a problem, tell me." Great, I've got my own little Rainman. (That phrase is one I say to him OFTEN, since he doesn't tell me what's the matter most of the time. I tell him if there's a problem, or if something is wrong, to tell me. He does sometimes now tell me when he wants a bottle, or if he has an ouchie. So we've made progress, but not apparently as much as I thought. He tends to repeat what we tell him when he doesn't understand what we're asking of him (not the only times that he parrots, but that's a common trigger for him.) So I'm guessing he doesn't really get what I mean, when I ask if something is wrong, or if he has a problem. I thought I had broken it down enough for him to understand what I meant, but I guess we need to work on that idea/concept some more.
If you haven't had to deal with the parroting yourself, you have no idea how frustrating it is. Just remember that repeating game you played as kids, where you repeat every word that someone says "WHAT DID YOU SAY?" (and they respond) "what did you say?" "ARE YOU REPEATING ME?"- (they respond) "are you repeating me?" "STOP THAT"- "Stop that" "NO REALLY, I MEAN IT."- "No really, I mean it." (and so forth)
AAAAARRRRRGGGGGHHHHH! That game gets old, really quick. Except with Gavin, it's not a game. He's just trying to figure out how to talk, and figure out what people are saying to him, etc. But it's INCREDIBLY frustrating and mentally taxing/exhausting!
Tonight, he was in the laundry room and knocked over our bowl of coins (that we take from the laundry.) He tried several times to pick them up and put the bowl back up on the dryer, but kept spilling the bowl when he'd try to put the bowl back. So Terry went in to check on him. He said Gavin was sitting on the floor saying "Problem. Problem. If you have a problem, tell me." Great, I've got my own little Rainman. (That phrase is one I say to him OFTEN, since he doesn't tell me what's the matter most of the time. I tell him if there's a problem, or if something is wrong, to tell me. He does sometimes now tell me when he wants a bottle, or if he has an ouchie. So we've made progress, but not apparently as much as I thought. He tends to repeat what we tell him when he doesn't understand what we're asking of him (not the only times that he parrots, but that's a common trigger for him.) So I'm guessing he doesn't really get what I mean, when I ask if something is wrong, or if he has a problem. I thought I had broken it down enough for him to understand what I meant, but I guess we need to work on that idea/concept some more.
If you haven't had to deal with the parroting yourself, you have no idea how frustrating it is. Just remember that repeating game you played as kids, where you repeat every word that someone says "WHAT DID YOU SAY?" (and they respond) "what did you say?" "ARE YOU REPEATING ME?"- (they respond) "are you repeating me?" "STOP THAT"- "Stop that" "NO REALLY, I MEAN IT."- "No really, I mean it." (and so forth)
AAAAARRRRRGGGGGHHHHH! That game gets old, really quick. Except with Gavin, it's not a game. He's just trying to figure out how to talk, and figure out what people are saying to him, etc. But it's INCREDIBLY frustrating and mentally taxing/exhausting!
Wednesday, November 10, 2010
Gavin and autism testing
Gavin WAS diagnosed with autism when we did the evaluation a couple of weeks ago. Shhhh...it's a secret though. Really, we're not telling people. A FEW select people know, and not even all of our family knows, and that's the way we want it.
We don't completely agree with the diagnosis (for more than one reason, one of which is the fact that they diagnosed him on the basis of assuming he was language delayed, when 3 other speech evaluators had told us within a month of the diagnosis that he wasn't delayed for expressive language now. I figure, if they're wrong even on that, I certainly don't believe anything else that they decide. Second, they expected him to do things as far as a 24 month old would do, forgetting about the fact that we've taught him to SAY things instead of just looking at people to convey his requests. For example, they wanted him to look at them to request continuing a fun activity. They didn't know that we've taught him to say "more" or "again, please", and he's said this for months now. BUT, according to the developmental age they evaluated him at (24 months for expressive language, i.e., what he actually says vs what he understands), they expect 24 month old kids to look at a person to continue a fun activity. SO, I have a real problem with them evaluating him at a younger age, when 3 other people had told us within the last month before he went for his autism evaluation that he was caught up as far as expressive language. Like I said, if they got that wrong (I got with majority rules--3 against 1? The 3 wins.), I don't believe other stuff they decide. When their language score affects what they expect him to do, I think that affected the diagnosis. Plus, they said he was language delayed, but I think they forget about the fact that preemies don't tend to be completely caught up by age 2, which also affected some of their diagnosis.
So, I think we're going to wait 1-2 years, then get him tested again. And it WON'T be at that place again. Terry mentioned that he thought they were quite condescending there. I have to agree, but it's unusual for Terry to say things like that, so I figure it wasn't just me that had a problem with them!
Anyway, remember, we're not telling people about the diagnosis. First, because we don't know if it will "stick" when we get him re-tested. Second, we don't want people treating him differently because of the diagnosis, and some people will. Even some family members will. So please, don't tell people.
We don't completely agree with the diagnosis (for more than one reason, one of which is the fact that they diagnosed him on the basis of assuming he was language delayed, when 3 other speech evaluators had told us within a month of the diagnosis that he wasn't delayed for expressive language now. I figure, if they're wrong even on that, I certainly don't believe anything else that they decide. Second, they expected him to do things as far as a 24 month old would do, forgetting about the fact that we've taught him to SAY things instead of just looking at people to convey his requests. For example, they wanted him to look at them to request continuing a fun activity. They didn't know that we've taught him to say "more" or "again, please", and he's said this for months now. BUT, according to the developmental age they evaluated him at (24 months for expressive language, i.e., what he actually says vs what he understands), they expect 24 month old kids to look at a person to continue a fun activity. SO, I have a real problem with them evaluating him at a younger age, when 3 other people had told us within the last month before he went for his autism evaluation that he was caught up as far as expressive language. Like I said, if they got that wrong (I got with majority rules--3 against 1? The 3 wins.), I don't believe other stuff they decide. When their language score affects what they expect him to do, I think that affected the diagnosis. Plus, they said he was language delayed, but I think they forget about the fact that preemies don't tend to be completely caught up by age 2, which also affected some of their diagnosis.
So, I think we're going to wait 1-2 years, then get him tested again. And it WON'T be at that place again. Terry mentioned that he thought they were quite condescending there. I have to agree, but it's unusual for Terry to say things like that, so I figure it wasn't just me that had a problem with them!
Anyway, remember, we're not telling people about the diagnosis. First, because we don't know if it will "stick" when we get him re-tested. Second, we don't want people treating him differently because of the diagnosis, and some people will. Even some family members will. So please, don't tell people.
Gavin DOES pay attention to other kids!
We went to the school's reading night last Friday evening in the school library. We saw a girl from one of Gavins classes (he's in 2 classes, each one has about 6 kids in it.) She immediately recognized Gavin and came right over, kept telling her mom "there's Gavin", etc, and wanting to play with him. They've never played together in class, but that's ok. He didn't even seem to know she was there (he didn't care about the stories they were reading either, surprising to me since he loves reading at home.) So I just figured maybe he really did just play with toys at this time, and not WITH the other kids.
Today, we went to the other class. They went outside to play on the playground since it was nice weather. We got to the door (to go outside) before the other kids, so waited for everyone there. This other little boy, Henry, took off running down the hall (his mom followed right away.) Gavin started to run after them, and I told him no. He looked at me and said "Henry is running."
I thought that was great! First because speech therapists have been telling me he doesn't know his verbs (even though he does when I talk to him. He doesn't necessarily know them in pictures, but does in real life.) Second, it shows he does pay attention to the other kids- not only did he notice the kid running, but he remembered the other boy's name. I've only told Gavin the boy's name once I think ( a few weeks ago), but they do sing the "looking through the window, who do I see, I see Gavin (or other name) looking at me" song every time they have class.
I was just so happy to see that he really does pay attention to other kids. They supposedly don't start playing WITH other kids so much until they reach about 3 years old, so that's not a problem at this time, but it's hard to tell how much he is really noticing what the other kids are doing for play, etc. Although, I have noticed he has been doing considerably better about sitting at the table with the other kids during snack-time in their classes. he still doesn't eat that much, but he can see that the other kids do eat their snacks, and I see him taking it all in, looking around at everyone watching them while he's eating his snacks. What a great decision to put him in 2 classes this fall! He's getting so much interaction and socialization out of them! (I'm sure his feeding therapy with the other little boy is helping too.)
Today, we went to the other class. They went outside to play on the playground since it was nice weather. We got to the door (to go outside) before the other kids, so waited for everyone there. This other little boy, Henry, took off running down the hall (his mom followed right away.) Gavin started to run after them, and I told him no. He looked at me and said "Henry is running."
I thought that was great! First because speech therapists have been telling me he doesn't know his verbs (even though he does when I talk to him. He doesn't necessarily know them in pictures, but does in real life.) Second, it shows he does pay attention to the other kids- not only did he notice the kid running, but he remembered the other boy's name. I've only told Gavin the boy's name once I think ( a few weeks ago), but they do sing the "looking through the window, who do I see, I see Gavin (or other name) looking at me" song every time they have class.
I was just so happy to see that he really does pay attention to other kids. They supposedly don't start playing WITH other kids so much until they reach about 3 years old, so that's not a problem at this time, but it's hard to tell how much he is really noticing what the other kids are doing for play, etc. Although, I have noticed he has been doing considerably better about sitting at the table with the other kids during snack-time in their classes. he still doesn't eat that much, but he can see that the other kids do eat their snacks, and I see him taking it all in, looking around at everyone watching them while he's eating his snacks. What a great decision to put him in 2 classes this fall! He's getting so much interaction and socialization out of them! (I'm sure his feeding therapy with the other little boy is helping too.)
Wednesday, November 3, 2010
Wow, I'm late updating!
Oops. I kept meaning to update this blog, and kept running out of time. To sum up the last 2 months:
Gavin had his 3 year testing (at 2 year, 9 months according to their protocol) through the school. He tested below average on the social part of speech, like answering questions and responding to cues. He tested pretty much average on the expressive part of speech that included vocabulary, but lower on receptive. He tested highest on the gross/fine motor stuff. All it means is that we need to work on asking him questions (and not just "what is that?" More like "what do you use to do blank?" or verb questions, since verbs were not his strong point.) Speech therapy is going to start coming out more often, and the early education teacher (Emily) will continue to come out once a week.
We took Gavin to the new pulmonologist, and she was completely in agreement about Gavin not starting preschool at this time. She wants him to not use oxygen for a whole winter before she allows him to start school (he used it more than once last winter, including in March of this year.) She thinks he is having trouble with reflux which is exacerbating his lung problem, so we're supposed to start on Prevacid again (I still haven't gotten it filled. Too busy!)
We had a great trip to VT in late Sept. Too short of a visit, and we had colds for the first week, and didn't get to see everyone we wanted to, but at least we got back for a while. He only got to see his cousins for one day, but they made up for lost time in those few hours they were together. The house was like a zoo! Gavin had a great time!
We had a speech therapy assessment at the same place he does feeding therapy. The therapist there (Lonnie) said his expressive language was ok,but receptive was a bit low, and she wanted him to work on question words. Same stuff as the school found. So she is going to be doing therapy once a week with him. (We had our first appt yesterday, and she said he's already doing better. Probably because I've been working with him on that. i.e. "Who pulls the mail?" "Who hates getting stuck in the rain?" I used his Thomas trains as questions, since I know he's familiar with them. He didn't get what I was asking, at first, but got better with it. He wasn't always right when he answered, but at least seemed to get the idea. I've also been getting him to answer yes/no questions. That was the same thing, he didn't get it at first, but is doing better with it.
That's enough of an update for now. Maybe I'll get around to posting more about the VT trip later.
Gavin had his 3 year testing (at 2 year, 9 months according to their protocol) through the school. He tested below average on the social part of speech, like answering questions and responding to cues. He tested pretty much average on the expressive part of speech that included vocabulary, but lower on receptive. He tested highest on the gross/fine motor stuff. All it means is that we need to work on asking him questions (and not just "what is that?" More like "what do you use to do blank?" or verb questions, since verbs were not his strong point.) Speech therapy is going to start coming out more often, and the early education teacher (Emily) will continue to come out once a week.
We took Gavin to the new pulmonologist, and she was completely in agreement about Gavin not starting preschool at this time. She wants him to not use oxygen for a whole winter before she allows him to start school (he used it more than once last winter, including in March of this year.) She thinks he is having trouble with reflux which is exacerbating his lung problem, so we're supposed to start on Prevacid again (I still haven't gotten it filled. Too busy!)
We had a great trip to VT in late Sept. Too short of a visit, and we had colds for the first week, and didn't get to see everyone we wanted to, but at least we got back for a while. He only got to see his cousins for one day, but they made up for lost time in those few hours they were together. The house was like a zoo! Gavin had a great time!
We had a speech therapy assessment at the same place he does feeding therapy. The therapist there (Lonnie) said his expressive language was ok,but receptive was a bit low, and she wanted him to work on question words. Same stuff as the school found. So she is going to be doing therapy once a week with him. (We had our first appt yesterday, and she said he's already doing better. Probably because I've been working with him on that. i.e. "Who pulls the mail?" "Who hates getting stuck in the rain?" I used his Thomas trains as questions, since I know he's familiar with them. He didn't get what I was asking, at first, but got better with it. He wasn't always right when he answered, but at least seemed to get the idea. I've also been getting him to answer yes/no questions. That was the same thing, he didn't get it at first, but is doing better with it.
That's enough of an update for now. Maybe I'll get around to posting more about the VT trip later.
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