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Subject:
From:
Tamar Raine <[log in to unmask]>
Reply To:
Cerebral Palsy List <[log in to unmask]>
Date:
Thu, 14 Aug 2008 21:30:55 -0700
Content-Type:
text/plain
Parts/Attachments:
text/plain (233 lines)
Lisa,
glad to know he is finally getting the help he needs. 
my dad and I went one day to uc berkeley to see the dectalker in 1984. but as I was walking at the time, and it weighed 20 lb, and it sounded awful, it wouldn't be right for me.  I bought a little purse-sized franklin dictionay with a screen that held 32 letters. kind of like the cell phone gadgets now days.  
More recently, I had an aac, but it still uses dectalk voices, so very hard for folks to understand  who are not used to it.  in fact people told me they can understand me better than the aac - but then again my speech is much better now than it was in the past because of all the feldenkrais lessons I have had.  But because I WANT TO give poetry readings and maybe give speeches, my dad got me a laptop with at&t voice kate on it. I love kate's voice, but i get frustrated because there is no way to correct pronounciation, like my name. 
anyway,  i wish dad had gotten me a lighterweight laptop. i do have a briefcase on my powerchair, but still, it's a bit heavy to lift.  I think after I buy a condo, I'll ask my sis for a lightweight laptop.  
Lisa, have you heard of the feldenkrais method? It is a very gentle, yet powerful bodywork that teaches the body-brain to work in ways that are easier.  It might help your boy.  Some Easter Seal centers and ucp centers have this available.  
Tamar

 
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
http://www.zazzle.com/TamarMag*
Tamar Mag Raine
[log in to unmask]
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~



----- Original Message ----
From: Michael H. Collis <[log in to unmask]>
To: [log in to unmask]
Sent: Thursday, August 14, 2008 4:15:41 PM
Subject: Re: Say it Sam XPI

lisa, Does he have an IEP?  Do you know? 

---- Original message ----
>Date: Thu, 14 Aug 2008 08:16:26 -0500
>From: The Stone Family <[log in to unmask]>  
>Subject: Re: Say it Sam XPI  
>To: [log in to unmask]
>
>Long story short.  The school would not provide a device for home use and we
>were insistent on signing (they didn't want to go that route as they had no
>strong folks in this area) as we could not afford a device on our own.  Even
>so, the devise he uses at school is a minimal devise (Go Talk, I believe).
>Thank goodness we have a speech therapist with higher aspirations of what he
>is capable.  He has been able to get some basic communications out, but in
>the last year has really been frustrated that he couldn't get more
>understanding to us. 
>
>We finally spoke to the right person and now have him on Medicaid and MDCP -
>Both have been unbelievable at getting things that we just haven't been able
>to do on our own.  We are now able to get more therapies and we are hoping
>this is going to be huge asset to him.  
>
>His background - He is ambulatory (wheelchair used for malls, theme parks,
>etc), non-verbal, but understands everything you say, stubborn as a mule,
>seizures under control (finally), has a great sense of humor, spoiled
>rotten, and just a really awesome kid. He has not been challenged in the
>educational setting and we are really pushing back on them to educate him.
>I see what you guys are doing and there is no reason he can't be as
>productive with the right education.  
>
>
>
>-----Original Message-----
>From: Cerebral Palsy List [mailto:[log in to unmask]] On Behalf Of
>Tamar Raine
>Sent: Thursday, August 14, 2008 1:10 AM
>To: [log in to unmask]
>Subject: Re: Say it Sam XPI
>
>I'm just curious why your son's communication needs haven't been met before=
>? these devices have been around since the 90's?? =0A=A0=0A~~~~~~~~~~~~~~~~=
>~~~~~~~~~~~~~~~~~~=0Ahttp://www.zazzle.com/TamarMag*=0ATamar Mag Raine=0ATa=
>[log in to unmask]
>~~~~~~~~=0A=0A=0A=0A----- Original Message ----=0AFrom: The Stone Family <a=
>[log in to unmask]>=0ATo: [log in to unmask]: Wednesd=
>ay, August 13, 2008 9:56:03 PM=0ASubject: Re: Say it Sam XPI=0A=0AThanks fo=
>r the advice.=A0 At almost 12, he has really had no means of=0Acommunicatin=
>g (some sign language and just being independent) so we are=0Aexcited.=A0 E=
>ncouragement and advice are both welcome!=0A=0A=0A=0A-----Original Message-=
>----=0AFrom: Cerebral Palsy List [mailto:[log in to unmask]] On Beh=
>alf Of=0AAnthony Arnold=0ASent: Wednesday, August 13, 2008 11:19 PM=0ATo: C=
>[log in to unmask]: Re: Say it Sam XPI=0A=0ASpeaking from =
>experience, just allow him to play and explore on his own, I=0Adid that a f=
>ew years back when I changed vocabularies, and it was very=0Aeffective. Whe=
>n he locates whatever he wants, it definitely encourages him=0Ato try more,=
> but you don't want to get on him for incomplete sentences, just=0Aback off=
> until you know he knows where something is. I was once with=0Asomebody who=
> insisted on complete sentences from somebody who barely got=0Atheir device=
> and that was totally stressing and discouraging them =0A=0AThanks, =0AAnth=
>ony Arnold =0ARemote Troubleshooter for PRC =0Awww.anthonyarnold.net=0Aanth=
>[log in to unmask] Message-----=0AFrom: Cerebral P=
>alsy List [mailto:[log in to unmask]] On Behalf Of=0AThe Stone Fami=
>ly=0ASent: Wednesday, August 13, 2008 10:40 PM=0ATo: [log in to unmask]
>.ORG=0ASubject: Say it Sam XPI=0A=0AWill do - the rep is in town on Monday =
>so we will get our training then - in=0Athe meantime, we are starting to pl=
>ay around with it and will be trying to=0Adetermine what will work best for=
> Matt (pictures and speech for each).=A0 He=0Afound tacos today and was ver=
>y proud of himself!=0A=0AWill catch up later next week once I have had a bi=
>t of time with it.=0A=0A=0A=0A-----Original Message-----=0AFrom: Cerebral P=
>alsy List [mailto:[log in to unmask]] On Behalf Of=0AAnthony Arnold=
>=0ASent: Wednesday, August 13, 2008 10:31 PM=0ATo: [log in to unmask]
>RG=0ASubject: Re: I came back=0A=0AYou have to keep us updated on your expe=
>rience with the Sam XPI Tablet, I=0Adon't think I have seen one before, but=
> at conferences I tend to stay away=0Afrom other company's booths. If there=
>'s a device I truly want to look at, I=0Ahave my attendants do my snooping,=
> they know what to ask and how to get=0Acompanies to talk. =0A=0AThanks, =
>=0AAnthony Arnold =0ARemote Troubleshooter for PRC =0Awww.anthonyarnold.net=
>[log in to unmask] Message-----=0AFrom: Cer=
>ebral Palsy List [mailto:[log in to unmask]] On Behalf Of=0AThe Sto=
>ne Family=0ASent: Tuesday, August 12, 2008 8:00 PM=0ATo: [log in to unmask]
>CORS.ORG=0ASubject: Re: I came back=0A=0AIt is a Say It Sam XPI Tablet by W=
>ords Plus.=0A=0A-----Original Message-----=0AFrom: Cerebral Palsy List [mai=
>lto:[log in to unmask]] On Behalf Of=0AMichael H. Collis=0ASent: Tu=
>esday, August 12, 2008 7:09 PM=0ATo: [log in to unmask]: =
>Re: I came back=0A=0ALisa, what type of device is he getting? =0A=0A---- Or=
>iginal message ----=0A>Date: Tue, 12 Aug 2008 17:45:28 -0500=0A>From: The S=
>tone Family <[log in to unmask]>=A0 =0A>Subject: Re: I came back=A0=
> =0A>To: [log in to unmask]>=0A>Thanks - I have enjoyed being he=
>re with this group -=A0 I will definitely=0Asign=0A>up as the device he is =
>getting is so intimidating.=A0 We are just now getting=0A>my son the types =
>of services he has needed - we just were not aware they=0A>were available.=
>=A0 You guys are great!=0A>=0A>=0A>=0A>-----Original Message-----=0A>From: =
>Cerebral Palsy List [mailto:[log in to unmask]] On Behalf Of=0A>Ken=
>dall D. Corbett=0A>Sent: Tuesday, August 12, 2008 5:35 PM=0A>To: C-PALSY@LI=
>STSERV.ICORS.ORG=0A>Subject: Re: I came back=0A>=0A>Lisa,=0A>=0A>I really t=
>hink it could be helpful to you.=A0 There are a lot of people with=0A>varyi=
>ng degrees of expertise in AAC, but they are a good group, and welcome=0A>a=
>ll kinds of questions.=A0 I'm not an AAC user, but I feel welcome there.=0A=
>The=0A>place I work is building expertise in AAC, and that's how I got invo=
>lved=0A>=0A>On Tue, Aug 12, 2008 at 4:27 PM, The Stone Family <=0A>allthest=
>[log in to unmask]> wrote:=0A>=0A>> We will be receiving our first communic=
>ation device tomorrow for my 12=0A>year=0A>> old son.=A0 Would this group b=
>e something that could benefit us?=0A>>=0A>> Lisa=0A>>=0A>>=0A>> -----Origi=
>nal Message-----=0A>> From: Cerebral Palsy List [mailto:[log in to unmask]
>ORS.ORG] On Behalf=0AOf=0A>> Kendall D. Corbett=0A>> Sent: Tuesday, August =
>12, 2008 4:54 PM=0A>> To: [log in to unmask]>> Subject: Re: I ca=
>me back=0A>>=0A>> ACOLUG=3DAugmentative Communication OnLine Users Group.=
>=0A>>=0A>> Here's the webpage with the basic info on it.=0A>>=0A>> http://d=
>isabilities.temple.edu/programs/assistive/acolug/=0A>>=0A>> It's a pretty f=
>reewheeling group, like C-Palsy=0A>>=0A>> On Tue, Aug 12, 2008 at 1:42 PM, =
>Michael H. Collis <[log in to unmask]>=0A>> wrote:=0A>>=0A>>=A0 > ACOLUG?=A0 =
>What's that?=0A>> >=0A>> > ---- Original message ----=0A>> > >Date: Tue, 12=
> Aug 2008 11:23:16 -0600=0A>> > >From: "Kendall D. Corbett" <kendall.corbet=
>[log in to unmask]>=0A>> > >Subject: Re: I came back=0A>> > >To: [log in to unmask]
>ICORS.ORG=0A>> > >=0A>> >=A0 >Anthony,=0A>> > >=0A>> > >Welcome back!=A0 I'=
>ve kind of kept up through ACOLUG.=A0 Mike, that might=0A>> > >interest you=
>.=A0 If so, ask Anthony or me about it!=0A>> > >=0A>> > >On Sat, Aug 9, 200=
>8 at 10:52 PM, Anthony Arnold=0A>> > ><[log in to unmask]>wrote:=0A>=
>> > >=0A>> > >> Friends,=0A>> > >>=0A>> > >>=0A>> > >>=0A>> > >> The majori=
>ty of you probably remember me, I'm Anthony Arnold from=0A>> Grand=0A>> > >=
>> Forks North Dakota, the augmentative and alternative communicator=0Awho=
>=0A>> > works=0A>> > >> in technical support at the Prentke Romich Company.=
> I decided to=0Atake=0A>> a=0A>> > >> little break from the list while trav=
>eling, but never did rejoin=0A>until=0A>> > now,=0A>> > >> and I sure have =
>missed everybody. Life is basically the same, I=0A>remain=0A>> > >> living =
>independently and employed with the Prentke Romich Company,=0A>but=0A>> > >=
>> however I was offered a position in the research and development=0A>> > d=
>epartment=0A>> > >> which I start in October, we had to get another guy tra=
>ined before I=0A>> > move=0A>> > >> up. I will sure miss helping people, bu=
>t I'm ready for more=0A>> challenging=0A>> > >> work. I also enjoy hearing =
>my parents tell friends of the family the=0A>> > >> exciting news, and that=
> I know the inners and what components work=0A>and=0A>> > >> which=0A>> > >=
>> don't.=0A>> > >>=0A>> > >>=0A>> > >>=0A>> > >> I'm looking forward to reu=
>nite with everybody!=0A>> > >>=0A>> > >>=0A>> > >>=0A>> > >> Thanks,=0A>> >=
> >> Anthony Arnold=0A>> > >> Remote Troubleshooter for PRC=0A>> > >>=0A>> >=
> >> www.anthonyarnold.net <http://www.anthonyarnold.net/>=0A>> > >> anthony=
>@anthonyarnold.net <mailto:[log in to unmask]>=0A>> > >>=0A>> > >>=0A>>=
> > >>=0A>> > >>=0A>> > >> -----------------------=0A>> > >>=0A>> > >> To ch=
>ange your mail settings or leave the C-PALSY list, go here:=0A>> > >>=0A>> =
>> >> http://listserv.icors.org/SCRIPTS/WA-ICORS.EXE?SUBED1=3Dc-palsy=0A>> >=
> >>=0A>> > >=0A>> > >=0A>> > >=0A>> > >--=0A>> > >=0A>> > >=0A>> > >Kendall=
>=0A>> > >=0A>> > >An unreasonable man (but my wife says that's redundant!)=
>=0A>> > >=0A>> > >The reasonable man adapts himself to the world; the unrea=
>sonable one=0A>> > >persists in trying to adapt the world to himself. There=
>fore, all=0A>> progress=0A>> > >depends on the unreasonable man.=0A>> > >=
>=0A>> > >-George Bernard Shaw 1856-1950=0A>> > >=0A>> > >------------------=
>-----=0A>> > >=0A>> > >To change your mail settings or leave the C-PALSY li=
>st, go here:=0A>> > >=0A>> > >http://listserv.icors.org/SCRIPTS/WA-ICORS.EX=
>E?SUBED1=3Dc-palsy=0A>> >=0A>> > -----------------------=0A>> >=0A>> > To c=
>hange your mail settings or leave the C-PALSY list, go here:=0A>> >=0A>> > =
>http://listserv.icors.org/SCRIPTS/WA-ICORS.EXE?SUBED1=3Dc-palsy=0A>> >=0A>>=
>=0A>>=0A>>=0A>> --=0A>>=0A>>=0A>> Kendall=0A>>=0A>> An unreasonable man (bu=
>t my wife says that's redundant!)=0A>>=0A>> The reasonable man adapts himse=
>lf to the world; the unreasonable one=0A>> persists in trying to adapt the =
>world to himself. Therefore, all progress=0A>> depends on the unreasonable =
>man.=0A>>=0A>> -George Bernard Shaw 1856-1950=0A>>=0A>> -------------------=
>----=0A>>=0A>> To change your mail settings or leave the C-PALSY list, go h=
>ere:=0A>>=0A>> http://listserv.icors.org/SCRIPTS/WA-ICORS.EXE?SUBED1=3Dc-pa=
>lsy=0A>>=0A>> -----------------------=0A>>=0A>> To change your mail setting=
>s or leave the C-PALSY list, go here:=0A>>=0A>> http://listserv.icors.org/S=
>CRIPTS/WA-ICORS.EXE?SUBED1=3Dc-palsy=0A>>=0A>=0A>=0A>=0A>-- =0A>=0A>=0A>Ken=
>dall=0A>=0A>An unreasonable man (but my wife says that's redundant!)=0A>=0A=
>>The reasonable man adapts himself to the world; the unreasonable one=0A>pe=
>rsists in trying to adapt the world to himself. Therefore, all progress=0A>=
>depends on the unreasonable man.=0A>=0A>-George Bernard Shaw 1856-1950=0A>=
>=0A>-----------------------=0A>=0A>To change your mail settings or leave th=
>e C-PALSY list, go here:=0A>=0A>http://listserv.icors.org/SCRIPTS/WA-ICORS.=
>EXE?SUBED1=3Dc-palsy=0A>=0A>-----------------------=0A>=0A>To change your m=
>ail settings or leave the C-PALSY list, go here:=0A>=0A>http://listserv.ico=
>rs.org/SCRIPTS/WA-ICORS.EXE?SUBED1=3Dc-palsy=0A=0A-----------------------=
>=0A=0ATo change your mail settings or leave the C-PALSY list, go here:=0A=
>=0Ahttp://listserv.icors.org/SCRIPTS/WA-ICORS.EXE?SUBED1=3Dc-palsy=0A=0A---=
>--------------------=0A=0ATo change your mail settings or leave the C-PALSY=
> list, go here:=0A=0Ahttp://listserv.icors.org/SCRIPTS/WA-ICORS.EXE?SUBED1=
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>
>-----------------------
>
>To change your mail settings or leave the C-PALSY list, go here:
>
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