Has anyone attempted to setup an AAC device with out their educators help.

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michael.c.singleton76

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Apr 18, 2014, 6:13:56 PM4/18/14
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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

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Apr 21, 2014, 10:24:21 AM4/21/14
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        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
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michael.c.singleton76

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Apr 21, 2014, 10:33:33 AM4/21/14
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We live in PA. We have CHOP but they don't see Autistic children her age.

Heidi S.

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Apr 21, 2014, 11:38:17 AM4/21/14
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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

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Apr 21, 2014, 12:06:37 PM4/21/14
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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

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Apr 21, 2014, 1:28:54 PM4/21/14
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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.

michael.c.singleton76

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Apr 24, 2014, 8:40:47 PM4/24/14
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Thank you every one so very much for all the replies and emails.  Although the info is overwhelming it is very helpful.  We at least have a plan.  We have contacted the guy from DuPont who seems to be the "guy" when it comes to AAC devices( at least in our area).  I have taken the self-study courses from the AAC institute and have learned a lot.  The most important thing being that we need a professional to get us pointed in the right direction.  I have also gained a lot of knowledge for our upcoming meeting at school.  And feel pretty confident that after they hear our concerns they might have an interest themselves in learning more information so that they can help my daughter and many more children effectively communicate in the future.  It is terrible that it has go to this point but we also contacted the Department of Education who understood our concerns and at the very least this might have the school making some better choices with our daughter(unfortunately the communication device is not the only problem).  But we should have some resolution after this meeting.  Regardless of the schools stance we are seeking and outside SLP and this summer hope to re-program the device to better meet her needs.  Possibly seeking a new one so we can control what is and isn't done to it.  We are also looking into to different schools and have finally a meeting in the works with an advocate.  I am sure I missed some other things we have going on in the future.  But again thanks for all the help!


On Friday, April 18, 2014 6:13:56 PM UTC-4, michael.c.singleton76 wrote:
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