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Post by Jodi on Nov 12, 2009 12:42:16 GMT -5
Ditto Bob...
Pay close attention to him, see what is triggering the behavior. Ryan (11) was hitting a classmate. Turned out, the classmate was really annoying him. Ryan's poor language skills made it difficulty for him to be understood, and being physical stopped the annoyance. Once we figured out why he was hitting, we replaced the behavior with verbally and physically appropriate responses, such as "STOP" with his hand held up. He also uses a communication device. If another kid is being inappopriate, Ryan is one of the first to say "keep your hands to yourself" - that's a big difference!
Good luck...
Jodi
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Post by Jodi on Nov 3, 2009 12:04:54 GMT -5
What is great about this is that there are a lot of kids that are already familiar with the ds controls, so it takes that initial "shock" away. Portable too... Ryan's device is HUGE... of course it has more advanced technologies too.
If parents have no means (or need) for a more sophistacated device, something like this is great. Keep in mind for future planning. Learning a communication device is like learning a new language (or computer program). When you change devices because you have "outgrown" one, then you may end up needing to learn a whole new language. We've been through that too, and we are STILL transitioning after 2 years... takes a while.
Anyhow, just wanted to say again that this is a fantastic way to get a kid communicating... something like this is way more efficient than using systems like PECS (if the child has the physical skill of touching the screen with accuracy).
Thanks for sharing A!
Jodi
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Post by Jodi on Nov 1, 2009 21:19:29 GMT -5
It's been a long time since I posted a photo... here it goes... Mr. Fredrickson (Carl) from the movie UP
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Post by Jodi on Oct 29, 2009 11:05:54 GMT -5
Jackie, that is such a good point to bring up and share. While Ryan has some obsessive behaviors that are of a "stimming" nature, there is a difference! He will obsess about certain movies, and right now it is (hate to say it) Willie Wonka and the Chocolate Factory! The character obsession is there too just like you described. Right now it is anything to do with dolls/disney princesses. Now if he were a girl, that would not be a big deal, but dad is not too thrilled about this. He is in Jr. High (11), and they have a prize box for incentive. Ryan ALWAYS picks girlie things - purses, dolls, etc... ugh!!! Of course, I'm obsessing about New Moon right now ;D Moderation is the way to go. Jodi
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Post by Jodi on Oct 29, 2009 0:21:33 GMT -5
I think I post this every year... Ryan STILL wants to be a witch for Halloween So I finally got him interesting in another character for this year... he chose Carl (Mr. Fredrickson) from the UP movie. He uses this raspy voice and has been practicing saying "trick or treat" LOL! We have a button down dress shirt with a bow-tie, suspenders, a sports coat, a white wig, white eye brows, and a cane... pretty easy to put together. Oh yeah, he already wears the glasses. I have to try to put some white stubble on his face So what other characters are out there?
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Post by Jodi on Oct 26, 2009 12:52:40 GMT -5
We have 1 at Stanford University, but you have to live within a certain radius to be seen. We are not even close!! Then there is 1 in San Diego but it only accepts children from 1 to 5 or 6. bummer, huh!
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Post by Jodi on Oct 26, 2009 11:13:00 GMT -5
Thanks Jen... I'm thinking like an interventionist... someone that specializes in behavior - not the typical school psych. We have had FBA's, classroom plans, individual beh. plans - really familiar with that stuff... just trying to think outside of all the "typical" routes and was checking to see if anyone had any kind of experience outside of the norm.
My district is really good to us. Remember how they didn't have any real good options for 4/5th grade, so we went straight to JR high, but we had lots of changes in the program so that it worked for Ryan? They are just terrific in that regard. We never really have any problems (knock on wood) so that is why I'm trying to think outside of the box with this behavior stuff... I think they will consider doing something different.
Thanks for the link!
Jodi
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Post by Jodi on Oct 26, 2009 11:06:05 GMT -5
Hugs to you Jackie... that is why I love uno. Most people just do not understand. I am grateful for all that Ryan can do, but there are things that other kids are doing (like right now it is travel ball - lot's of people's kids at work do travel ball) that Ryan can not do. When Ryan was 3, a fellow parent with a son with ds and autism had a shocked look on his face when I said I hoped that Ryan would be able to marry and live independently. At 3 it was a possibility. Now that he is 11, I'm not as confident and he (the coworker) has a "told ya so" attitude which just ticks me off. I have since "amended" my hopes - but they are still there. Do you ever feel like saying "screw Holland?" LOL... Thanks for sharing your moments, Jackie - the good and the bad. I know it helps me so that I do not feel alone on this journey! Jodi
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Post by Jodi on Oct 26, 2009 1:08:12 GMT -5
We have been dealing with behaviors with Ryan for some time. I like to think of myself as being pretty proactive, but I gotta say as this kid gets older, it seems like his behaviors are getting worse in some ways. He is getting more physical and aggressive... not good! I know we are getting some hormonal involvement now, and some behaviors are just him being a butt, still I would like to help him get these under control before he gets much older/bigger. So I was thinking about OT, PT, Speech, etc and was thinking why doesn't the district have people come in and work with Ryan who specialize with learning appropriate behaviors? On the home front, I'm looking into "direct services" through regional center (have to attend 2 trainings first). We had a behavior specialist in our home for over a year, and that person just gave us strategies, but I gotta say we just can't seem to get through to the kid. Just like OT or other specialists, why can't someone at the district come in and work with Ryan with his behaviors at the school too? I've sent an email to the district's Behavior Specialist regarding this, and I haven't heard back from her... they are probably thinking "oh great, another therapy for Ryan"... LOL!!! They are pretty good to him Do any of you have such services with your district? Anything in the home? I just think it is time to move in another direction since we are still having some of the same issues we've had for a long time. Jodi
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Post by Jodi on Sept 1, 2009 22:28:52 GMT -5
Happy belated anniversary You are 39 again, right? Jodi
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Post by Jodi on Sept 1, 2009 22:22:26 GMT -5
We have been using Vantage for a little over a year, and before that we used Springboard. We are very familiar with this stuff. I have posted and posted about how these devices are so good for kids that want to communicate. The biggest myth is that kids will stop trying to talk if they get a device. In all cases I have witnessed, including my own son, communication improves with the use of a device. The child tends to articulate clearer and their vocabulary increases as the use of the device increases. I can't say enough good stuff about AAC devices - they are wonderful!!
Thanks for posting about it!
Jodi
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Post by Jodi on Sept 1, 2009 22:18:32 GMT -5
Hi CC~
It's a trip that I am reading this because I was just diagnosed with pneumonia in my right lung too!! Poor Chris... it's a tough thing.
Hope Chris gets better quick and that he is able to get the lump removed soon. Just like we know our kids, I knew there was something more wrong with me and my dr got it wrong too. That is so frustrating!!
Hang in there...
Jodi
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Post by Jodi on Aug 25, 2009 1:30:44 GMT -5
Hi Dolly,
Ryan is very verbal, but it is hard to understand what he is saying. I think one of the main reasons we pushed for a more sophisticated device was out of concern for Ryan to be able to express all sorts of things, included when he is not feeling well.
I've posted about Springboard and Vantage devices. Ryan has used both. The company the manufactures the device is Prentke Romich and I think the web site is prentrom.com. I'd be glad to answer any questions you might have. Ryan does not use it all the time, but he knows the system in and out and can express himself fluently when needed. He also uses a magna doodle to write down what he is trying to say - sometimes he even spells it out loud (the spelling is hardly ever right but we can usually figure it out).
Sorry he is not feeling well. Hope you get some answers soon.
Jodi
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Post by Jodi on Aug 12, 2009 11:36:26 GMT -5
Hi Sandy, and Hello IAN!!
I have an 11 year old son, Ryan, with Ds.
Ryan also had 3 small holes, but we were lucky in that they closed without surgery by the time he was 1.
You mentioned about weight gain. I know there are heart issues, but I thought I would mention that when Ryan was 3, he had his tonsils and adenoids removed, along with ear tubes put in. He had sleep apnea and that was keeping him from gaining weight. He went from being in the lower 5th percentile for kids with Ds to being in the 80th percentile in a couple of years following surgery.
I am, of course, not suggesting that this is the issue with Ian, but I thought I would mention our situation so that you can think if Ian has had lots of ear infections or any trouble sleeping (periods when he stops breathing for several seconds).
Anyway... WELCOME! This is a great place to share information and get support!!
Jodi
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Post by Jodi on Jul 25, 2009 19:02:40 GMT -5
Bob - I will miss you guys by one day! We fly home on August 6th! Good luck, and TRY to have some fun!!!
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