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Post by Jodi on Mar 23, 2010 22:46:00 GMT -5
Thank you all for your input. I have chatted with our team, and we are going to focus on what Ryan can do. They gave me some alternatives and I'm very happy about the level of flexibility they are all offering.
Persnickity clan LOL - YEP!!
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Post by Jodi on Mar 23, 2010 22:42:34 GMT -5
We have annual passes at disneyland... and have been to WDW 3 times in the past 4 years! The GAC is perfect! We actually took a letter from Ryan's Dr that stated he has difficulty standing for long periods of time in lines, and that always does the trick. We requested the letter about a month before the trip... our Dr. has done it each year we have gone, but I'm not sure it is really even necessary! Keep in mind that some of the special assistance lines can still be a bit of a wait. Character breakfast/lunch/dinner are really good for our kids. The characters come to you, fill out an autograph book, allow you to take tons of pictures, and most characters are super good with kids of all ages. They are sweet to the young one's and give teenagers a run for their money too! Does Joy like the princesses? There is a Princess Fair in Mickey's Toontown... one side has Cinderella, Belle and Aurora... the other side has Tinkerbell and some other fairies. Hate to say it, by Ryan LOVES the princesses right now!!! He was in love with each of them... and each princess was so very good with him The Lion King Show and the Nemo Show at the Animal Kingdom are awesome! Ryan has participated in the Lion King show 2 times! At the end of the show, the characters will come invite children to participate in a parade that goes in a circle around the stage while playing different hand-held instruments (can shakers etc). I don't know if you are going to any other park other than the Magic Kingdom... but this is our 2nd favorite! We did go to the Poly to see the Lilo and Stitch Luau show... it was just "ok" for us, and we wouldn't do that again. It just didn't really hold Ryan's attention, but maybe Joy would enjoy it more. Some packing advice... we bought a cheap over-the-door shoe organizer for our stuff. They are only a few bucks at the local drugstore. They are great for keeping all sorts of things in, like hair brushes, lotions, and other types of toiletries Keeps your counter space available too. Have a great time!!! Jodi
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Post by Jodi on Mar 18, 2010 17:30:55 GMT -5
Steph - Ryan uses my itouch all the time. He has a nano. He is such a pro at electronics!!!
Thanks for the update!
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Post by Jodi on Mar 18, 2010 17:28:40 GMT -5
Hey everyone...
Ryan is at his 3-year mark again and the district wants to know if I want them to do the triannual evaluations/testing. He is now 11. Have any of you opted out of certain tests as your kids got older?
Part of me knows that it will be hard news to swallow again. I know he is delayed, but getting the test results is so dang hard for me every time. He qualifies for services because of the MR and he has a speech qualification too, so it's not like they are going to deny any services. Another part of me doesn't want to subject him to tests that may make him feel frustrated about his ability to understand.
Thanks in advance for sharing your thoughts!
Jodi
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Post by Jodi on Mar 18, 2010 17:24:06 GMT -5
Thanks A!
I've had no takers. I let Susan know we were going to loan it out locally to some parents here so they can it out and see if they think it is something their kids might benefit from it. It is now the "old" model, but man it is just so powerful. Once Ryan went to beverages and selected "water" and then went to seasons and picked "fall" because he wanted to say "waterfall" - how cool, huh?
Thanks for trying.
Jodi
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Post by Jodi on Feb 10, 2010 23:54:12 GMT -5
My problem was with the "how and when you child could take the equipment home" part - I want it 24/7! I really work with a wonderful team, but I chose to not hassle this specific issue - again it was MY choice to not fight every aspect of the device... was just easier for me to buy my own. Please know that the district has a device too! It is redundant, I know, but what is really cool is that the modeling works fantastic in this situation. Ryan uses his device, and his aide models on the district's device how to access certain areas or perform certain tasks. And Ryan is extremely possessive with his device too, so trying to show him something on it is a problem because he things you are taking his "voice" away - doesn't like that at all!
The district is not obligated to let the child have the device 24/7, and since they could argue that he didn't need it ALL the time, that was just not acceptable to me when he is not understood by most people. You are right, others can and have gone the battle route - and sadly they should not have to. My route was more expensive in the end, but I am thrilled at the results and the fact that it is always with us. I just wanted my guy to have his own device, and did not want the district having his means of communication hanging over my head. Hope that makes sense. Thanks for sharing your thoughts!
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Post by Jodi on Feb 10, 2010 22:47:19 GMT -5
CC - you are absolutely right, if it is in the IEP, then the district will provide a device. However, they are not required to let you take it home. It is to be used on campus only. There are many parents that I know who have purchased a separate device for home because their district will not allow for the school's device to go home with the child. They cite liability over what happens to the device when not on campus being an issue. You are lucky that your district was not so strict with Christopher's devices!! (...I misspoke here and thank you CC for clarifying this below... you CAN take a device home - but you have to have permission, the liability needs to be squared away, and there MAY be limitations on when and for how long it can be home... sorry for overgeneralizing this point!) I purchased my separate device (twice) because I wanted my son to be able to communicate in all environments, not just school. Wouldn't it be nice if all districts weren't so strict? Jodi
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Post by Jodi on Feb 10, 2010 16:38:10 GMT -5
Where is this picture???
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Post by Jodi on Feb 9, 2010 17:33:03 GMT -5
My son used Springboard from Prentke Romich up until a couple of years ago. We upgraded to the Vantage device, and loaned out his Springboard to another family that was dealing with an older son that has Ds and autism who had no means of communication. Evenutally their son was officialy screened for a device, and they chose one that is different from the Springboard.
We've decided to go ahead and sell the Springboard. It has some of the add-on software components beyond the standard issue. If you, or if you know someone who might be interested, PM me and we can chat.
Jodi
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Post by Jodi on Feb 9, 2010 11:55:23 GMT -5
Me again... just wanted to add that one of the most challenging things when dealing with behavior is consistency. I know many of the right ways to handle certain behaviors, but to really change them is to understand that it takes patience and time. It is definitely a marathon!
Consistently responding to behaviors will give you son the guidelines he needs in order to better understand his environment. If you become lazy and do not stick with a program, that sends a mixed message and you may end up starting all over again.
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Post by Jodi on Feb 9, 2010 11:44:18 GMT -5
Welcome back... I'm looking forward to hearing how the new job goes! How did Daniel come upon the opportunity?
Jodi
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Post by Jodi on Feb 9, 2010 11:42:08 GMT -5
A PUPPY!!! That is so cool! We got my dad a puppy when he was diagnosed with leukemia, and she is his best friend now.
Thanks for the update Laura!
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Post by Jodi on Feb 8, 2010 23:48:04 GMT -5
She would be a wonderful addition
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Post by Jodi on Feb 8, 2010 23:40:30 GMT -5
Has anyone heard how he is doing? Gosh I sure hope that boy is getting better!!!
{{{{{{Chase and Robin}}}}}}
Jodi
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Post by Jodi on Feb 8, 2010 18:30:53 GMT -5
Hi Debby,
Has Noah always had behavior issues? Or did they just begin?
I have an 11 year old boy that has had behaviors off and on for 5 years now. He has torn his socks, thrown his shoes, gone under the desk, done the drop of flop (refusing to get up), and urinated on himself. I do no know why Noah is having behaviors. All I can do is share what I have been through with my son.
When Ryan has had behaviors, sometimes it was because he was overwhelmed. The materials being covered were either over his head, or they were moving too fast for him to participate. Other times, Ryan was just bored and used bad behaviors to seek attention of adults. Ryan was heavily praised when he started school, and he became a bit of a performer. He could not do any work without an adult praising his every move. Obviously at some point this became too much for adults to do and Ryan needed to learn that the praise would be not so easy to get.
Regardless of the situation, whenever Ryan had severe or repetitive behaviors, we would meet as a team with a behaviors specialist to discuss. Before the meeting, the teacher would track the behaviors noting what happened just before, what the behavior was, and what the consequence was. Sometimes it was a matter of coaching Ryan to do a non-preferred task. For example, if we know that math is going to set him off, we talk before math begins to help transition him to the new activity and follow that up with a preferred activity if he does the math without behaviors.
I don't agree with the physical approach the school is suggesting. His behavior is a form of communication, whether it be he is overwhelmed or that he is just refusing to act appropriately. Regardless, the team needs to work WITH you son, not against him. Again, I do not know your exact situation, but perhaps calling an emergency team meeting to discuss what is happening and developing an emergency plan to track what is going on so that a behavior plan can be developed for your son. Your son urinating and defecating is just another behavior. Something is making your man very unhappy.
How is Noah's communication skills? Can he verbalize well? Is he able to tell you about his day? You sound stressed and your instincts are telling you there is something wrong... go with your instincts. You may have to lead the team to find the right solution... don't let them lead you!!
Jodi
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