Re: Digest for aacparents@googlegroups.com - 11 updates in 2 topics

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Kristina White

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Apr 21, 2014, 3:40:44 PM4/21/14
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See if you can see Dick Litton at DuPont hospital in Wilmington. He is an amazing AAC expert and might be able to help. 

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On Apr 21, 2014, at 1:48 PM, aacpa...@googlegroups.com wrote:

Group: http://groups.google.com/group/aacparents/topics

    "michael.c.singleton76" <michael.c....@gmail.com> Apr 18 03:13PM -0700  

    Simply put we have no faith in our school. We had them agree that
    alternative placement might be the best. As this information went through
    the ranks they now show less interest in doing this. The speech teachers
    "knows everything" and many of our ideas in IEP meetings are shot down. I
    suggested changing the layout and six months and 2 IEP meetings later they
    think that they should do it.
     
    Some background. 13 year old non-verbal autistic child. She is very
    prompt dependent but shows independence when it comes to the selections she
    is making. We began using a PECS book. Years ago we all agreed that using
    a communication device was the next step to take. Sadly she had never
    mastered PECS. (I understand that we have all made mistakes along the
    way). We trialed a few and ended up with an iPad with touch chat. They
    began with a generic layout and it has not changed much. There are many
    things on there that she does not use and this is 2 years later. We
    questioned the school as to who is qualified to make the changes and the
    speech teacher came back arrogantly and said it was her. I felt if she was
    she would have done it shortly after the school year began. Next month we
    have a meeting with the person in charge of her room and the director of
    special ed in her school. The goal is to try and rekindle our relationship
    and move forward.
     
    So I got this bright idea that I was going to give the school till the end
    of the year and then over the summer I was going to see what I could do. I
    started taking the self-study courses from the AAC institute with the
    thought that at least in my meeting I would have the proper language and
    could persuade the school to understand that they don't have the skills to
    program the iPad and need to seek out other team member's to help. But so
    far all I have learned that what we are doing is not correct and none of us
    know what it is to do. With all that being said does anyone have any
    thoughts? Who is qualified to do an assessment? Do they have an official
    title? How do we seek them out? If anyone has set up one outside of the
    school how did they go about obtaining the know how to do it? Any
    suggestions are welcome!

     

    mcda...@aol.com Apr 21 10:24AM -0400  

    Hi, Sadly I found out early on that the school SLP didn't have a clue about AAC. What state do you live in? I ask this because sometimes it helps on seeking out resources if we all know what state you are from. Do you have a local Children's hosp. near by? They often will have a dept to help with this. What we ended up doing was going outside of the school and then brining that person in. It was met with a very chilly start for sure. I will wait until I see what state you are from as I am from Massachusetts. Mary-Clare
     
     
    -----Original Message-----
    From: michael.c.singleton76 <michael.c....@gmail.com>
    To: aacparents <aacpa...@googlegroups.com>
    Sent: Mon, Apr 21, 2014 8:09 am
    Subject: Has anyone attempted to setup an AAC device with out their educators help.
     
     
    Simply put we have no faith in our school. We had them agree that alternative placement might be the best. As this information went through the ranks they now show less interest in doing this. The speech teachers "knows everything" and many of our ideas in IEP meetings are shot down. I suggested changing the layout and six months and 2 IEP meetings later they think that they should do it.
     
     
    Some background. 13 year old non-verbal autistic child. She is very prompt dependent but shows independence when it comes to the selections she is making. We began using a PECS book. Years ago we all agreed that using a communication device was the next step to take. Sadly she had never mastered PECS. (I understand that we have all made mistakes along the way). We trialed a few and ended up with an iPad with touch chat. They began with a generic layout and it has not changed much. There are many things on there that she does not use and this is 2 years later. We questioned the school as to who is qualified to make the changes and the speech teacher came back arrogantly and said it was her. I felt if she was she would have done it shortly after the school year began. Next month we have a meeting with the person in charge of her room and the director of special ed in her school. The goal is to try and rekindle our relationship and move forward.
     
     
    So I got this bright idea that I was going to give the school till the end of the year and then over the summer I was going to see what I could do. I started taking the self-study courses from the AAC institute with the thought that at least in my meeting I would have the proper language and could persuade the school to understand that they don't have the skills to program the iPad and need to seek out other team member's to help. But so far all I have learned that what we are doing is not correct and none of us know what it is to do. With all that being said does anyone have any thoughts? Who is qualified to do an assessment? Do they have an official title? How do we seek them out? If anyone has set up one outside of the school how did they go about obtaining the know how to do it? Any suggestions are welcome!
     
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    "michael.c.singleton76" <michael.c....@gmail.com> Apr 21 07:33AM -0700  

    We live in PA. We have CHOP but they don't see Autistic children her age.

     

    "Heidi S." <buch...@yahoo.com> Apr 21 08:38AM -0700  

    Does your school have an AAC coordinator? Do you have a parent advocate attending IEP meetings? Do you have an organization like the PEAL Center in Pittsburgh, PA close to you? Does your child see an SLP outside of school? If yes, this SLP should be able to help you. If not, get a referral from you pediatrician for her to see a clinical SLP who has experience with AAC.
     
     
     Heidi
    On Monday, April 21, 2014 8:34 AM, michael.c.singleton76 <michael.c....@gmail.com> wrote:

    We live in PA. We have CHOP but they don't see Autistic children her age.
     
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    Dawn Caldwell <dcaldw...@comcast.net> Apr 21 04:06PM  

    I would add emphasis on the SLP who works with AAC.  Here in CO, SLPs either work on verbal or AAC but generally not both.  (In the schools, you have an AAC state level team that trains the local SLP / aides / teachers but the SLP is verbal based.)  While teaching strategies may be the same, knowledge of the device and device specific issues are better suited (IMHO) to a SLP with AAC experience.  I would add that you want to consider both immediate communication and long term communication and lots of apps and devices work well for immediate needs but have no growth path for long term, independent communication.  Will Touch Chat be understandable by your daughter, your family and her providers now and will she be able to grow with it in the future for independent communication?   Do you all model with the device, ask her questions using the device only?  If she is hitting random keys, do you take the device out of reach, respond to the statement made and then give her back the device so that she understands her words have meaning and create interactions?
    For you, as you have a little bit of time before summer, I would suggest:
    a.  Can you identify specifically what you'd like to work on over the summer, greetings, requesting certain family members, food items, etc...
    b.  Once you have identified a short list of summer goals, think through the best approach for the app, ie., hide all icons but those, leave all icons but color code those, create "cheat sheets" that show the sequence, etc...
    c.  Then, make sure everyone is at home is educated, i.e., everyone says "hello" and waits for your daughter to say "hello" back.  If she is having problems, the person models the method to say hello and tries again.  Then shows the cheat sheet if needed.  It is hard to break habits, i.e., to allow your daughter to express herself without the device.
    d.  See if you can have in home therapy from an SLP - AAC over the summer.  This person can really help you identify real life scenarios for practice based upon your home routines and goals. 
    e.  You might consider an IEE for an outside evaluation of AAC devices, i.e., an evaluation with a seating specialist, access / OT specialist, vision, autism and SLP.  There are lots of apps / devices and there may be one that is better suited to your child.  (I believe that Autismate is endorsed by Children's Hospital Boston - one of the top SLP AAC places for kids.)  You may want to talk with an advocate or attorney however as there are steps to follow for this process.  If you have an assessment, I would strongly promote that you make a list of things you want in the hardware and software, i.e., portable, loud enough for people to hear (without speakers), vision considerations (size/color/shape of icons, other low vision enhancements), a stand, wheelchair access (if app), durability, warranty, access method needed, vocabulary (icon, phrase, visual scenes, literate, not literate, both, etc...) training / growth paths, training support, amount of customization required, etc...  CO has a loan bank so that you can trial devices for longer than a demo and/or have access to the device while waiting for the insurance/Medicaid funding to go through for the selected device.
    f.  If your state has ABA coverage, I would HIGHLY recommend having an ABA person / team help you over the summer.  They can create a rewarding program for your daughter where they master icons.  They can help show you how to use the ABA method when they are not there, i.e., how to be clear in your communication, how to provide positive reinforcement, how to track data to see if you are making progress, etc...
     
    In essence, you might, depending on your insurance/Medicaid waiver, be able to create a functional summer school program at home to focus on figuring out how your daughter learns, what motivates her to use her device, what the best device / program for her will be, etc... 
     
    We have never used TouchChat.  (My son is 13, has multiple challenges - legally blind, triplegic CP, nonverbal, seizures, etc..) I found it frustrating, i.e., pronouns in different locations, conjugations spelled wrong, no icon search (to help you find an icon), the requirement for literacy beyond a low level of icons, four hits for the word "water" etc...  We use PRC because they have LAMP (language acquisition through motor planning) and a very streamlined icon location system and icon search help.  I also picked it, because, as an IT person, I did not want to be building pages and/or redesigning his device every few years.  (I'm not trying to change your mind.  Just explaining why we do not have it.)
     
    We have always programmed our son's device so we are not having to wait on others.  Because of Robin, the AAC Institute and attending Closing the Gap, I have been able to be a much stronger and better advocate for his needs.
     
     

     

    "michael.c.singleton76" <michael.c....@gmail.com> Apr 21 10:28AM -0700  

    Our school is a public one if that matters.
     
    Heidi
     
    They do not have an AAC coordinator. When I questioned them on who was
    qualified to do the "changes" the speech teacher emailed us and said she
    was. We used an advocate years ago and they were not very helpful. I know
    this probably means they were not the right person for us. Through the
    years our BSC has gone into IEP meetings with us and played that role. No
    SLP outside of the school but we are seeking that out now.
     
    Dawn
     
    I agree with the SLP with AAC training but the school believes that the
    current speech teacher is qualified which our major disagreement.
    I would add that you want to consider both immediate communication and long
    term communication and lots of apps and devices work well for immediate
    needs but have no growth path for long term, independent communication.
    Will Touch Chat be understandable by your daughter, your family and her
    providers now and will she be able to grow with it in the future for
    independent communication? I see know growth path and that has been my
    primary argument all year. Do you all model with the device, ask her
    questions using the device only? We never model the device i don't think,
    an example of what we do is if she is mad doing homework we might show her
    that she can select "take a break" When doing home work we wait for her to
    request items like pens or crayons and the colors. If she is hitting random
    keys, do you take the device out of reach, respond to the statement made
    and then give her back the device so that she understands her words have
    meaning and create interactions?
    She generally does not hit things randomly on purpose. But we do create
    interactions like forgetting a fork with dinner or asking her what she
    wants do? And she will make a request. Everyone always says Hi to her and
    she uses to respond Hi.
     
    a. Can you identify specifically what you'd like to work on over the
    summer, greetings, requesting certain family members, food items, etc...
    b. Once you have identified a short list of summer goals, think through
    the best approach for the app, ie., hide all icons but those, leave all
    icons but color code those, create "cheat sheets" that show the sequence,
    etc...
    c. Then, make sure everyone is at home is educated, i.e., everyone says
    "hello" and waits for your daughter to say "hello" back. If she is having
    problems, the person models the method to say hello and tries again. Then
    shows the cheat sheet if needed. It is hard to break habits, i.e., to
    allow your daughter to express herself without the device.
    d. See if you can have in home therapy from an SLP - AAC over the summer.
    This person can really help you identify real life scenarios for practice
    based upon your home routines and goals.
     
    This is similar to how I imagined our plan with exception to the cheat
    sheet. Are you saying have a picture for the icons that you want her to
    select and point them out on the sheet instead of the device?
     
    Question E. I think the device physically is sufficient. I just think the
    software side is not correct.
     
     
    On Friday, April 18, 2014 6:13:56 PM UTC-4, michael.c.singleton76 wrote:

     

    "michael.c.singleton76" <michael.c....@gmail.com> Apr 20 05:24PM -0700  

    I thought I asked this before but could not find it so if I did I
    apologize. The school has not done a great job setting up my daughters
    iPad with touch chat. We had no assessment and they just did what they
    thought. The layout currently is similar to the beginning generic layout
    we started with. I took the self-study courses from the AAC institute all
    I have learned is we did not do it right. I am not sure who is qualified
    to do it and how we seek those individuals out. And I am trying to figure
    how to convince the school they are not qualified and need to seek out
    others to help. Any help is greatly appreciated.

     

    "Heidi S." <buch...@yahoo.com> Apr 21 06:46AM -0700  

    I have set up my son's iPad with Speakforyourself. His SLP recommended an Accent 700 from Prentke-Rommich, but there was too much red tape from my insurance. I researched different iPad apps and considered Speakforyourself best for my son, suggested it to his SLP and she agreed. I bought the iPad and the app and set it up myself with help of their website and Youtube tutorials. We once had a meeting at school with the AAC coordinator, teacher, school SLP and school OP so they could tell me what they needed from this app. I went to school several times to take pictures of his classmates and teachers, and objects in his classroom for the new icons and words. His clinical OP and SLP sometimes give suggestions to add icons and words. I took pictures and added words of most of the items he can choose from in the therapy room of his clinical OP.
     
     
    Heidi
     
     
     
    On Monday, April 21, 2014 6:17 AM, michael.c.singleton76 <michael.c....@gmail.com> wrote:

    I thought I asked this before but could not find it so if I did I apologize.  The school has not done a great job setting up my daughters iPad with touch chat.  We had no assessment and they just did what they thought.  The layout currently is similar to the beginning generic layout we started with.  I took the self-study courses from the AAC institute all I have learned is we did not do it right.   I am not sure who is qualified to do it and how we seek those individuals out.  And I am trying to figure how to convince the school they are not qualified and need to seek out others to help.  Any help is greatly appreciated. 
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    Krista Cox <kris...@att.net> Apr 21 12:12PM -0400  

    We went rogue and did Speakforyourself on our own as well. We had the AAC assessment with the school but they only recommend a device if your child is completely nonverbal. My son is verbal but needs additional support- they were not willing to recommend AAC. Sfy is extremely user friendly and easy to program. A few short YouTube videos and I was off and running and have not looked back. I am confident I can handle the programming of the device myself with or without school support.
     
    That said going rogue does have its drawbacks. The school Slp claims to be supportive of us using the device but rarely touches it during therapy. His teachers at his private preschool are still totally intimidated by it and don't use it often. I am certain that the lack of professional support hinders his progress but we are still light years ahead of where we would be if we followed the school's lead instead of blazing our own trail.
     
    Can you learn the programing for the device? I would hate to rely on someone else for something so vital. Even if you find a support person right now there is no guarantee they will be around again the next time you need them and it sounds like the school is not very quick to respond to your requests. I hate that you might have to wait six months each time something needs modified. My advice would be learn this device or if it us truly not working for your daughter without extreme modification look for something else that will be a better fit and allow you to have control.
     
    Good luck to you and your daughter.
     
    Sent from my iPhone
     

     

    Dawn Caldwell <dcaldw...@comcast.net> Apr 21 04:20PM  

    This was a post I made on our CO P2P list serve.  I am very biased so I hope I do not offend anyone. 
     
     
     
    Hi X,
     
     
    You may not like my response.  :)  This is both about the 2 apps and AAC in general.  So, more info than you asked for but thought I would spew for a moment or two.
     
     
     
    I ABSOLUTELY LOATHE TOUCH CHAT AND PROLOQUO2.  Now, with that said, a lot depends on where your kiddo is at and where you want you kiddo to go on AAC.
     
     
     
    When looking at AAC:
     
    1.  Hardware:
     
    1a.  Is it appropriate for my child's needs?  If my child uses a wheelchair, is it wheelchair mountable?  If my child is mobile, is it portable?
     
    1b.  Does it have a warranty?
     
    1c.  Does it have other functions that are needed now or will be needed - such as connectivity to a computer for schoolwork, making phone calls, etc..
     
    1d.  Does it have the type of access my child needs - direct select, eye gaze, auditory scan.  Does it have touch gradation for direct select where fine motor isn't 100%?
     
    1e.  Does it meet my child's needs if my child has vision issues?
     
    1f.  Is it durable?  The school has gone through 4 iPads with Mason.  We are on our second.  This is with Otterbox protective coverings.
     
     
     
    2.  Software
     
    This is the most important component and too often overlooked but is THE most critical.  Most children cannot bounce between systems.  Thus, if you start on one system and then outgrow it's abilities, you have to start all over with another that meets your new needs, essentially throwing out all of your previous work and/or stunting your child at the level the device stops.
     
    2a.  Does the system have a training path, i.e., a level to start on that is easier while you are learning and then advances?
     
    2b.  Does it have a symbol set (if non-literate) that is usable by the child, i.e., if the child has low vision, are the icons clear and concise?  If using symbols, does the symbol also contain the word for literacy building?
     
    2c.  Does the company provide good learning materials that can be used at home/school?
     
    2d.  Does the layout of the system make sense?  Most times, the easiest systems to learn are those that are the most limiting once learned.
     
    2e.  Does it have an appropriate amount of language so that the child can say what she wants to say?  It's not okay to be limited to just nouns or just the pronoun "I".
     
    2f.  How much do I have to program into the system vs. is already in the system?  I don't want to spend my days programming page after page.  I want a program that has enough that my son can say what he wants to say, when he wants to say it and as fast as he can say it - regardless of what level he is now or in the future - and without my adding content.  What I program may not be what he wants to say. 
     
    2g.  Are icons and actions consistent across screens - i.e., are they in the same location from screen to screen?  do they do the same action in each screen?
     
    2h.  For iPad users, you will really need to be careful if you have touch issues.  Some apps are built that swipe like the iPad swipe which does not always register a user's touch.  (Mason had this issue with the new Dynavox Compass app.  Even if I wanted to use that app, it was not functional as he could touch the internal icons all he wanted and it would never register that he touched it.)
     
    2i.  Be leary of systems that only offer phrase based language.
     
    2j.  Can you trial it for little or no money before purchasing to make sure that it really fits your child and your family life?
     
     
     
     
     
    One thing that I always do when looking at new apps is have a list of phrases that I try to find.  If I can't find the phrases, I try to figure out why.  If I can find them, I try to analyze how logical it was and whether it works long term.
     
    a.  "I love you mom"  (present tense, common phrase, I pronoun, family member - These are basic icons.)
     
    b.  "She ate my popcorn yesterday." (conjugation of to eat which is still a core word, pronoun variation, fringe word for popcorn and core word for time orientation.)
     
    c.  "Do you want to go to the xx"  (ability to ask/request, infinitive use of go, core word "want", etc...)
     
    d.  "Would you like to eat a green apple after dinner?" 
     
    And so on ~ about 10 statements that represent present, past, future tense, ask/refuse/direct/share. 
     
    Any system should have the basics - greetings, about me (name, age), food/drink, eat, want, hurt, help, days, time, color.  BUT, a good system will have core words that allow the child to express themselves in all situations - greeting a doctor, talking about their dreams, etc...
     
     
     
     
     
    SO, Touchchat .
     
    With Touch Chat, the early levels are pre-literate (up to 20 icon selection I think).  The levels are laid out poorly.  Examples:  It takes 4 hits to get the word "water".  Pronouns are split onto two pages.  You have to push an extra button to conjugate a verb.  Some conjugations show up misspelled in the text display bar.  There is no icon tutor to find the location of words.  Then, when your child has mastered 20, if your child is still not literate, you're hosed as the higher levels require the user to be literate.  What I find really frustrating about TC is the inconsistency.  If you are using the preset path, the icon actions are the same.  If you want to go outside the few core paths, they have access to other content but the icon actions are not the same.  (The core path always returns you to the main screen after selection.  The non-core path the user has to manually return to the main screen.)  Icons are not consistently located.
     
     
     
    Proloquo2:
     
    I have not looked at this in a very long time.  What I remember not liking is that it was not functional.  My son could say he wanted a cheeseburger but he couldn't say that he wanted 2 cheeseburgers or that he didn't want mustard on them.  Again, I'm sure it's improved in the last few years but I remember thinking that it was way too restrictive, way to focused on just want/need and "I".  Think about all of the things we talk about that are beyond want/need/I and make sure that it can do that. 
     
     
     
    SO, with all of that said, I will tell you that I am a huge proponent of PRC.  PRC was the culmination of a PHD linguist designing the language and an IT company building the hardware/software to support it.  They are the oldest AAC company on the market and are really focused on long term independence for folks who need AAC at whatever level.  It requires no programming by the communication partner but can be programmed if you wish.  The system allows for individual word selections, phrase based selections and/or visual scene usage (hot spots on a picture that talk).  The child can start at a very low level and work up to the adult level.  They have an iPad version of their software (but it is adult level).  (You can block out icons until you build up to that level.)  It is difficult for users with fine motor or vision challenges as there are a lot of icons in a small screen.  It is logical, consistent, portable. 
     
     
     
    PRC also has the Android platform Accent.  It's not cheap - you do have to purchase it as a full AAC device.  However, it has all the beauty of PRC software in a portable, Android based platform (for internet browsing, computer adaptation).  They have low vision options built in as well and the rectangular shape means that direct select users have less OT demands (for icons up high).  The case is super durable. 
     
     
     

     

    Shannon <sca...@aacinstitute.org> Apr 21 10:32AM -0700  

    Michael,
     
    Have you thought about having your child evaluated by the ICAN Talk clinic
    which a division of the AAC Institute. If you would like more information
    please visit our visit @ www.icantalkclinic.com. I also would be happy to
    have you speak with one of our clinicians who would be able to help. If you
    would like to call 412-402-0900.
    Best,
    Shannon
     
    On Sunday, April 20, 2014 8:24:49 PM UTC-4, michael.c.singleton76 wrote:
     

     

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