Monday, April 30, 2012

Frustration with ProLoQuo Continues

I am very frustrated with ProLoQuo, I wish I had done more research before buying the app.  I did a lot of research but a lot of it came up blank.   After my last post on ProLoQuo I got a response from them telling me to contact customer support, I did with a few of the issues I am having and here was there response.

First issues I am having,
-You can't position buttons where you want them.  Like for answers I would like "yes, no, maybe" on the same line and "thank you and your welcome" on another line.  With pro lo quo you get "yes, no, maybe, thank you" on one line and "your welcome" on the other.  This is a problem a lot of the time.

- You can't pick and choose from a larger vocabulary, so if you want to start your kid off slowly if you erase the vocabulary it came with you can't get it back unless you take their entire vocabulary and erase yours.

- I also would like to have a data base as a jumping off spot on their website, examples of how other have set it up.  According to age and ability.

Their response..


Hi Jennifer,
Thank you for contacting AssistiveWare Support. We are sorry to hear you are experiencing difficulties with setting up Proloquo2Go.  It would be my pleasure to assist you.
First, please know the default vocabulary is meant to be a starting point to customize for individuals. It is meant to have a range of elements for you to pick and choose.To limit access to items and offer a customized user experience, we recommend setting up a new User Space and copying and pasting items into it. As a user becomes more proficient, you can add more items. Ideally this is the intended way to set up the software, with the Default Home mainly used to copy items.
For instructions on setting up a new User Space, please see: How can I set up Proloquo2Go for a new user?
At this time, the button organization is not very flexible. However, there are some creative customizing you can do to achieve what you describe.
You can have blank buttons on your pages. Here is how to make a blank button:
  • select the edit button (pencil icon)
  • select the +
  • Do not enter in text into the Text to Speak area
  • Do not add photo or symbol
  • select add and there you will have a blank button
 In version 1.7 and later, you can change the spacing between items, ranging from Very Compact to Very Loose.
  • Enter Options View:

    *To open Options View on an iPad, tap the Options button (the AB icon) on the bottom toolbar.

    *To open Options View on an iPhone or iPod touch, tap the Views button (double overlapping squares) and then tap Options.
  • Tap on Appearance
  • Scroll down to Grid
  • Tap on Space Between Items
  • Select from the following: Very Compact, Compact, Medium, Loose, Very loose
We are addressing the issue of button organization in our major update, Proloquo2Go 2.0. You can learn more about the innovative features and follow our progress here: The Road To Proloquo2Go 2.0 
We also understand the need to be able to share individual page/s and will also be adding that feature. 
Please let us know how you make out or if you have any additional questions. We are always happy to help. 

It really feels like the person that responded has never used the device with a child or anyone starting out.  

Blank buttons will just confuse a child, you are teaching them to use a device and when they push a button it does something.  Blank buttons when you push them would do nothing and take up space in the sentence. 

The vocabulary they start you with is not a good jumping off start for anyone.  When I get some time I will take a few pictures of their "jumping off vocabulary.  

I hope the 2.0 update is better, when ever we will see it.  I read somewhere that it should be out April/May 2012, April is out and they just released 1.8.5 a few days ago.  Hopefully we will see it soon.  

Sunday, April 29, 2012

It's been 3 years.

I noticed Matt's first regression at the end of April in 2009.  It is hard to pinpoint when the regression happened.  At that time Matt had 5 words.  Mama, Dada, yellow, duck, and stop.  He was 15 months old so I don't know how long it took me to notice he lost his words.  I was talking to my friend and I mentioned I hadn't heard him talk in a while.  She told me to call ECI.  I remember I was in Houston with a friend at a conference when I finally made the call to ECI.  It was battle of flowers day and they were closed.
Within a month I did a lot of research and noticed other changes in Matthew.   He had gone from loving to be around children to hating it.  The first time I noticed it was in May, we had gone to Sea World just me and him and we were playing in the children's water area.  I thought he was going to have a blast, instead he just went off by himself and cried.
So much has changed since this time, and it has been a major roller coaster. The worst part is 3 year, many specialist, many test and we are honestly no closer to really finding out what is going on with my little boy.  This year we  have hit a new "milestone"  his regression in 2011 lasted longer and was harder than previous regression and here we are a year later and he is not passed where he was when he regressed last year.  

Thursday, April 26, 2012

Copied from Matt's Caring Bridge

This morning we had an appt with Matt's GI doctor.  I was looking forward to this visit to discuss the changes in Matt since we started his new formula.  When he drinks mainly formula his GI system works really well better than it ever has.  He then starts eating and when he starts eating his GI system slows down again and he stops eating.  We have been on a food roller coaster for the last month and a half.   I was hoping this would be another clue to give us answers.  
I was also hoping since he was doing better with the formula we could try to lower his nexium dose to see if we can start weening him off. 
What happened was Matt has gained 2 pounds the doctor was very excited about this and because he has put on some needed weight so he isn't going to change anything.  I am frustrated, I wish he was a more pro-active doctor.  

* Not on caring bridge  - since it is used for medical updates for family.  Matt had pictures taken today.  It was a short one pose/one change of clothes photo shoot since I was there to help a friend.  I always do take the opportunity to get pictures taken.  Here are a few of the shots. 










Wednesday, April 25, 2012

Proloquo2go

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When I envisioned Matt finally getting his ipad I thought, he is so smart he will pick up on ProloQuo right way.  My thoughts were from the moment it comes into our lives, we will see major improvements in communication.  Don't laugh, I see now how naive I really was.  Matt loves his ipad.  I loves the educational games and that it doubles as a tv.  He doesn't love proloquo.  It has been really hard to set up.  The actual setting up is pretty easy, but figuring out what to put in it and how to organize it is very hard.  
Matt is able to communicate right now, which is good and bad, good because we can put in the proloquo things he is saying so he can use them if theskills are lost.  At the same time it is bad because he doesn't have the desire to use the system.  Not to mention the things he says that I don't understand, I can't put them in proloquo and if they already in the system he doesn't know how to find it.  
The plan of action right now is for 5 minutes a few times a day sit down with Matt and communicate through proloquo.  I hope that it helps.  

Tuesday, April 24, 2012

What I learned from my Sea World Trip

-It is too hot for Matt to go to Sea World.  There isn't enough shade, they do have a lot of shade but as soon as you are out of the shade the sun is just so hot.
-Sea World has if possible become even less accessible.
 *Sea World is already a place that isn't very much fun in a wheel chair.  Any animal interaction area you    want to go to you have to get out of your chair to interact.  For Matt this isn't a problem but I can't imagine how many other people have to miss out.
*If you are in a wheelchair or stroller to get to many places you have to go out of your way to get there.
*When you go to the 4D theater to get cooled down they do about half the time let you in early though the side entrance.  They used to let you avoid the crowd and go out that way.  Now you have to go with the crowd, pushing a wheelchair though a crowded area and then an even more crowded store with 800 other people trying to get out.  (very difficult)
*If you go to a show (other than Clyde and Seamore) when you are in a wheelchair people always sit in front of you so you can't really see the show.  I have never understood this, it seems so mean for a tall guy to look behind them see a child in a chair and then just sit down right in their view.  - This happens every time, we didn't even bother going to the shows this time.  The Clyde and Seamore show has bottom row seating which most workers don't tell you about so if you don't know it is there you are stuck at the top, and if you go to the bottom you and the chair will get wet.  Matty does not like to get wet.
Now possibly the worse offense- When they build the new Sesame Street play area they added a Merry-Go-Round, they took the lead of Morgan's Wonderland and added wheelchair seating that is a ride.  (Matt doesn't use this because of course he doesn't need it yet he can get out of his chair.  At sea world that day I saw at least 3 other kids who were confined to their wheelchairs)  The wheel chair part of the ride had been disabled and it has just become another bench for people to sit on.  I saw some of the straps in the control area but they were not together for someone to grab and I am not sure they were all there.  Plus They don't seem very easy to put on so I doubt the worker would even offer to put it together, if it was possible.

We have had passes since Matt was  6 months old, he loves to feed the dolphins and the sea lions but we are seriously thinking of giving up our passes.

One of the only picture I took. 

A visual of the missing straps. 

Sunday, April 22, 2012

Thursday, April 19, 2012

April

As April continues not much is going on.  My husbands van has been broken and he doesn't seem to be in a hurry to fix it.  It leaves me and Matthew home a lot more than we were.  Matthew is now in OT and the extra therapy seems to fill up our week pretty fast.
Next Thursday we go see the GI doctor for Matthew, I am looking forward to the visit because I have a lot of question this time.  Matt is doing so much better on his new formula and I want it to continue, I would even love to take him off his nexium.
Here is a little of what we have been doing in photos.  I love seeing new photos from others so I wanted to add some.
Matt's Easter Basket

Matt Dyeing Easter Eggs 



Matt at his play group Easter Egg Hunt. 


 Matt at his gymnastics playdate. 

Matt Asleep with his iPad. 


Matt at Morgan's Wonderland with Mito Group

On the train 


 Matt caught a very big fish!  


After playing on the playground Matt stayed in his chair to rest but still played. 





At the park on a unusual cool evening. 

Tuesday, April 10, 2012

A year wraps up

If you have been reading my blog long or know me you know that Matt regresses and progresses.  When he was 14 months old he lost social and language skills.  A year later he was still behind but he had gained so may more skills than he had lost.  27 months comes along and he had a major physical regression, a year passed and he was everywhere!  He no longer needed braces and he was on the go 22/7.  39 months rolls around and he started his biggest regression so far.  He regressed in every area for 6 -7 months.  In the last five months Matt has made a lot of progress.  He is just started to regain the skills he had lost, but he has not gained more skills than he had lost.
In the past years when  would talk about Matt's regression the most surprising aspects was he had highs and lows, with each regression.  He didn't hit plateaus he couldn't pass, most regressive disorders from what i have heard hit plateaus and they are never able to get back where they where.  We are now in April, as we head towards the end I have fears of regression again.  If he regresses this month it will be the first time he isn't developmentally ahead then where he left off.
This scares me deeply
We have been setting up Proloquo2go.  It is a very long process and Matt isn't using it too much, right now his artic is at a high.  My speech therapist is telling me to take time to write down things he says so I can put them in proloquo so if he loses the ability to articulate he can still tell us his thoughts.

Our Easter was okay, not too much to report, on Matt's big easter egg hunt I had 100 eggs I brought he was with a 1 year old and a 7 year old, he got 10-15 eggs.  :-(  - my brother kept telling me he is having fun just let him be.  (right after he told me I under-estimate his intelligence and I don't' push him, we don't get along) I saw a good idea today I wish I had seen before, and I plan to do next year.  It is to put the child's  initial on the egg.  

Thursday, April 5, 2012

Exciting News!!!!

Matt's iPad was delivered today and tomorrow we go pick it up!!!  I am so excited, we have been waiting for 7 months!!!!!  YEA!!!!!!!

Monday, April 2, 2012

Waiting

We are still waiting for my son's iPad, it was ordered two weeks ago and from the last thing I heard it is not shipped.  I hope that getting his iPad will be life changing.  I am hoping that Matt will embrace the technology and use it as his voice.  My son has so much to say and I want to know what it is.  
Many times every day my son gets into a rotation, "I want you".. over and over again.  This might seem endearing, but it is frustrating.  Matt in fact doesn't want me, he wants me to do something but I rarely get to find out what it is.  If I don't say what do you want me to do, he doesn't even try to tell me what it is he wants me to do.  Most of the time I just really don't know and it becomes one big frustration.  
Matt is doing better cognitively.  It was just because he was tired, but even doing better I have to remind myself I must go over skills everyday with Matt or he loses them.  I have heard it is an early sign of a learning disability.  It is another frustration, Matt can have an idea mastered, we don't use it for  a week or two and the idea is not there anymore.  This is not limited to academics, this is in all areas ranging from manors like "please and thank you" to friends names.