Guest guest Posted October 4, 2006 Report Share Posted October 4, 2006 I don't know Suzanne...I mean I am not sure what to tell you that would work with the school district best, just thinking aloud here.... It sounds like you have a good argument that your son is ready to go beyond PECS as he has mastered it and there is plenty of examples of non-verbal autistics being fully able to communicate via other means. I would pull up these from articles and online to support your case. I am also thinking about assistive technology for my 4.5 yo non-verbal son in the next year or so. I talked to one friend who has a a friend with a formerly appraxic son (not autistic) who actually was greatly helped with this electronic communication system, a little hand-held computer that actually talked for him and was fully programable for a variety of uses and situations (it grows with the child). He modeled his use of language after the machine and it did not negatively affect his speech development at all....on the contraty, it was such a great facilitator!! I think these devices run at about $3-5,000. I have searched the internet for possible grants, but I did not get many hits. This does not mean there is no funding for such a purpose out there!! This friend-of-a-friend apparently got the device funded through a grant that was offered in her county of residence (Lorain). It's always worth searching for private funding sources such as family foundations (I am gonna go to do a search myself for this and other purposes at the Cleveland Foundation Center - it's downtown, free, and you are welcome to join me let's say next Wednesday or Friday - just let me know if you are interested. They have a great database of grant makers in our locality and nationwide also.) Anyhow, the CCBMR should be able to help you also if the school won't. It's a lot of money, I know, but they may be able to kick in part of the cost. If you won't ask, you will never get it. Chances are you won't get funds from the county anyhow, but it's worth a try. Don Pattison, my hubby, and Greg are diligently working on establishing the NortheastOhio chapter for the National Autism Alliance (NAA), which would be our local foundation. Once we raise some funds, grants will be made for a variety of purposes, including assitive technology and much more. So if you or anyone else is interested to join us, pls email me as we are looking for board members and many volunteers so that we can pull off our first fundraiser by the end of the year. Anyhow, I don't know if this email helped you or not.......but I hope it did, a little. Good luck and hang in there!!! SBShaft@... wrote: Hi, all! I just found out today that I have an IEP meeting next week for my littlest guy -- gee, his IEP isn't due until the end of this month...but hey, why not just do it tomorrow! AAAUUUGGHHH!!! Well, my little guy still doesn't speak yet(he's 5). He understands everything you say, but he cannot speak. He will say something every so often, but it's easy to miss and he almost never will repeat it. Here's the question...he has mastered the PECS thing -- and he really needs to go beyond it. He will not accept it at home -- never has, never will. We need something else. Has anyone ever asked for assistive technology beyond something like PECS and got it? If so, what was it and how did you convince them? Thanks! --Suzanne Check out the new AOL. Most comprehensive set of free safety and security tools, free access to millions of high-quality videos from across the web, free AOL Mail and more. Get your email and more, right on the new .com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2006 Report Share Posted October 4, 2006 Hi, ! Thank you very much for your input. I actually am on the e-mail list of your foundation -- I can't sit on the board as I can't make many meetings and may need some of those funds for my kids! -- but if I can help, I certainly will. The electronic communication system is exactly what I'm thinking of...but I can see their reactions in my mind's eye already! So, I'll definitely need to do some research to help build my case. The Director of Pupil Services is very research based -- which isn't a bad thing, because it says to me that she know IDEA 2004 -- so anything research-wise I can find that would help my case would be great. His IEP meeting is next Wednesday (YIKES!!!) -- they sprung it on me a little quickly! They always do! So, if you know of any web links to research that supports this kind of communication device, it would be much appreciated. If not, I'll look and send links to you if I find any! It's interesting that you should mention apraxia. I think my youngest has that -- in fact, that's what we were told by his OT from last summer (who was not part of the school system). I mentioned it in his last IEP meeting, but no one said boo about it. I'll definitely be bringing it up again this time. Again, , thanks for your help. I appreciate it! --Suzanne -----Original Message----- From: egerpatt@... Sent: Tue, 3 Oct 2006 11:33 PM Subject: Re: [ ] Assistive Technology I don't know Suzanne...I mean I am not sure what to tell you that would work with the school district best, just thinking aloud here.... It sounds like you have a good argument that your son is ready to go beyond PECS as he has mastered it and there is plenty of examples of non-verbal autistics being fully able to communicate via other means. I would pull up these from articles and online to support your case. I am also thinking about assistive technology for my 4.5 yo non-verbal son in the next year or so. I talked to one friend who has a a friend with a formerly appraxic son (not autistic) who actually was greatly helped with this electronic communication system, a little hand-held computer that actually talked for him and was fully programable for a variety of uses and situations (it grows with the child). He modeled his use of language after the machine and it did not negatively affect his speech development at all....on the contraty, it was such a great facilitator!! I think these devices run at about $3-5,000. I have searched the internet for possible grants, but I did not get many hits. This does not mean there is no funding for such a purpose out there!! This friend-of-a-friend apparently got the device funded through a grant that was offered in her county of residence (Lorain). It's always worth searching for private funding sources such as family foundations (I am gonna go to do a search myself for this and other purposes at the Cleveland Foundation Center - it's downtown, free, and you are welcome to join me let's say next Wednesday or Friday - just let me know if you are interested. They have a great database of grant makers in our locality and nationwide also.) Anyhow, the CCBMR should be able to help you also if the school won't. It's a lot of money, I know, but they may be able to kick in part of the cost. If you won't ask, you will never get it. Chances are you won't get funds from the county anyhow, but it's worth a try. Don Pattison, my hubby, and Greg are diligently working on establishing the NortheastOhio chapter for the National Autism Alliance (NAA), which would be our local foundation. Once we raise some funds, grants will be made for a variety of purposes, including assitive technology and much more. So if you or anyone else is interested to join us, pls email me as we are looking for board members and many volunteers so that we can pull off our first fundraiser by the end of the year. Anyhow, I don't know if this email helped you or not.......but I hope it did, a little. Good luck and hang in there!!! SBShaftaol wrote: Hi, all! I just found out today that I have an IEP meeting next week for my littlest guy -- gee, his IEP isn't due until the end of this month...but hey, why not just do it tomorrow! AAAUUUGGHHH!!! Well, my little guy still doesn't speak yet(he's 5). He understands everything you say, but he cannot speak. He will say something every so often, but it's easy to miss and he almost never will repeat it. Here's the question...he has mastered the PECS thing -- and he really needs to go beyond it. He will not accept it at home -- never has, never will. We need something else. Has anyone ever asked for assistive technology beyond something like PECS and got it? If so, what was it and how did you convince them? Thanks! --Suzanne Check out the new AOL. Most comprehensive set of free safety and security tools, free access to millions of high-quality videos from across the web, free AOL Mail and more. Get your email and more, right on the new .com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2006 Report Share Posted October 4, 2006 Hi Suzanne and , We used two different AAC device for over three years with our son until he gain conversational speech. We thought it was the best thing we did. Below are some websites and information I compiled for anothr family on a different list. We did apply to a local Elks group grant for the orignal device. I would be happy to talk to you both off list if needed. Hope this helps. Maureen Wirth Alnmo6@... 330-655-2037 Verbal Apraxia and more APRAXIA http://www.apraxia.ware.net/users/apraxia/aprbase/verbalapr.shtml http://www.apraxia.cc/ http://www.shop-in-service.com/apraxia.htm AAC GREAT PAGE - Talk to the list owner if you go with a DYNAVOX http://members.aol.com/dds4kids/dynavox.html KEY PERSON IN AAC STUFF Dr. Caroline Musselwhite http://www.aacintervention.com/ Funding by State http://www.resna.org/taproject/at/statecontacts.html http://sweb.uky.edu/~jszaba0/QIAT.html http://www.fctd.info/ Maybe when your son is older http://www.readplease.com/ AUTISM http://www.talkingwords.com/index.html http://trainland.tripod.com/pecs.htm Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2006 Report Share Posted October 4, 2006 Suzanne, You are more than welcome. I wish I had more time to write to the group.... I will be browsing now for more support and resources based on Maureen's list. Awsome start! I know that the latest IDEA (IDEIA, actually) just becoming effictive October 13, 2006, has changes in assistive tecnology, but I haven't gotten a chance to read through all of that yet. Barbara Yavorcik emailed to the group a very good link not too long ago about all the updates. I believe it is your school district's responsibility to provide this service to your child though. They can and probably will recommend a more low-tech avenue...so see if perhaps MRDD would share costs with your school. I would talk to a support administrator there and see what they can get you. I have also heard that some schools will loan out devices like this to parents. You may also try to get on some appraxia related . Some parents whose children were able to speak eventually do not need the device anymore and may want to sell it for less. Just some ideas. I will be doing this very soon too, but my son is still working on getting down PECS.... Take care, SBShaft@... wrote: Hi, ! Thank you very much for your input. I actually am on the e-mail list of your foundation -- I can't sit on the board as I can't make many meetings and may need some of those funds for my kids! -- but if I can help, I certainly will. The electronic communication system is exactly what I'm thinking of...but I can see their reactions in my mind's eye already! So, I'll definitely need to do some research to help build my case. The Director of Pupil Services is very research based -- which isn't a bad thing, because it says to me that she know IDEA 2004 -- so anything research-wise I can find that would help my case would be great. His IEP meeting is next Wednesday (YIKES!!!) -- they sprung it on me a little quickly! They always do! So, if you know of any web links to research that supports this kind of communication device, it would be much appreciated. If not, I'll look and send links to you if I find any! It's interesting that you should mention apraxia. I think my youngest has that -- in fact, that's what we were told by his OT from last summer (who was not part of the school system). I mentioned it in his last IEP meeting, but no one said boo about it. I'll definitely be bringing it up again this time. Again, , thanks for your help. I appreciate it! --Suzanne -----Original Message-----From: egerpatt To: Sent: Tue, 3 Oct 2006 11:33 PMSubject: Re: [ ] Assistive Technology I don't know Suzanne...I mean I am not sure what to tell you that would work with the school district best, just thinking aloud here.... It sounds like you have a good argument that your son is ready to go beyond PECS as he has mastered it and there is plenty of examples of non-verbal autistics being fully able to communicate via other means. I would pull up these from articles and online to support your case. I am also thinking about assistive technology for my 4.5 yo non-verbal son in the next year or so. I talked to one friend who has a a friend with a formerly appraxic son (not autistic) who actually was greatly helped with this electronic communication system, a little hand-held computer that actually talked for him and was fully programable for a variety of uses and situations (it grows with the child). He modeled his use of language after the machine and it did not negatively affect his speech development at all....on the contraty, it was such a great facilitator!! I think these devices run at about $3-5,000. I have searched the internet for possible grants, but I did not get many hits. This does not mean there is no funding for such a purpose out there!! This friend-of-a-friend apparently got the device funded through a grant that was offered in her county of residence (Lorain). It's always worth searching for private funding sources such as family foundations (I am gonna go to do a search myself for this and other purposes at the Cleveland Foundation Center - it's downtown, free, and you are welcome to join me let's say next Wednesday or Friday - just let me know if you are interested. They have a great database of grant makers in our locality and nationwide also.) Anyhow, the CCBMR should be able to help you also if the school won't. It's a lot of money, I know, but they may be able to kick in part of the cost. If you won't ask, you will never get it. Chances are you won't get funds from the county anyhow, but it's worth a try. Don Pattison, my hubby, and Greg are diligently working on establishing the NortheastOhio chapter for the National Autism Alliance (NAA), which would be our local foundation. Once we raise some funds, grants will be made for a variety of purposes, including assitive technology and much more. So if you or anyone else is interested to join us, pls email me as we are looking for board members and many volunteers so that we can pull off our first fundraiser by the end of the year. Anyhow, I don't know if this email helped you or not.......but I hope it did, a little. Good luck and hang in there!!! SBShaftaol wrote: Hi, all! I just found out today that I have an IEP meeting next week for my littlest guy -- gee, his IEP isn't due until the end of this month...but hey, why not just do it tomorrow! AAAUUUGGHHH!!! Well, my little guy still doesn't speak yet(he's 5). He understands everything you say, but he cannot speak. He will say something every so often, but it's easy to miss and he almost never will repeat it. Here's the question...he has mastered the PECS thing -- and he really needs to go beyond it. He will not accept it at home -- never has, never will. We need something else. Has anyone ever asked for assistive technology beyond something like PECS and got it? If so, what was it and how did you convince them? Thanks! --Suzanne Check out the new AOL. Most comprehensive set of free safety and security tools, free access to millions of high-quality videos from across the web, free AOL Mail and more. Get your email and more, right on the new .com All-new - Fire up a more powerful email and get things done faster. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2009 Report Share Posted August 5, 2009 Sally this is wonderful thank you !! Quote Link to comment Share on other sites More sharing options...
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