Wednesday, August 4, 2010

Augmentative and Assistive technology with Proloquo2Go, the +'s & the -'s from a Parent Perspective

Due to some awesome new apps, kids with Autism are now having access to inexpensive augmentative and assistive technology through companies like proloquo2go and good karma applications. In the past devices that spoke for children who were non verbal ran between $5000 and $10,000 and had to be covered by school districts and insurance. They were time consuming to get paid for and unfortunately were not user friendly or parent friendly. Parents were dependent on Speech Therapists to program the devices. They were also huge. It was like carrying a mini lap top with you at all times.

Today that has changed; unfortunately most school districts and insurance companies will not cover an iPhone or an iTouch because those are considered luxury items and not tools for communications. You can get the proloquo2go covered by flex spending if you have it. You can not get the iTouch or iPhone covered.

I have found some down sides to the iTouch, for one the games! The games are great to help with the fine motor, but they are also a distraction, Austin would much rather play games then use the device as a communication device. At school they are seeing much more success then we are.

The next issue is there is really no great case for the iTouch to protect them from a kid with Autism. Trust me I have bought many and I have not found any case that comes close to the OtterBox for the iPhone. I honestly hope the Otter Company takes the iPhone design and adds an external speaker to it. It would be a god send to our community. For that matter it would be great for anyone with young children who just use the iTouch for games.

The last issue will hopefully be resolved with the latest addition of the iTouch in the fall. It is the lack of a camera. One of the awesome differences between the $5000-$10000 and proloquo2go is the ability to make a talking PEC at a moments notice. Literally I , the parent, are not dependent on a speech teacher, I don’t need a computer or fancy program, I can make a new icon in under 5 minutes.

So after talking about these concerns with my friends who do not have a child with Autism, I was offered my friends old iPhone for Austin. She is giving me her phone and I am going to separate Austin’s toy from his Speech device. We will only have proloquo2go and First Then on the iPhone. On his iTouch we will have all the games he knows and love and it can be a much valued toy like I discussed in my April 10, 2010 blog.

We further discussed figuring out a way to get old, but working iPhones donated for local San Diego families who can’t afford them. My friends at PSHelper have generously offered to offer 40% off any plugin on their website when you send your used iphone or itouch to us to give to kids in the San Diego area with Autism. Use code "donate40" at checkout, they will contact you shortly after your order is received. There is no bigger generous offer then someone who can give the gift of speech to a child with Autism. This cuts the cost in half for parents who already pay so may expenses out of pocket, things that insurance does not pay like Occupational Therapy, Physical Therapy, ABA, RDI, Biomedical, the list goes on and an on.

By donating your old iPhone or iTouch to PSHelper, not only can you earn a discount you can help a child with Autism access his or hers voice through assistive technology and help parents who can’t afford such technology on their own.

I would encourage you all to PITAup and ask the same thing of your local friends who do not have a child with Autism to donate their old iPhone or iTouch to a child with Autism. Maybe we could make this project nationwide and make the gift of speech nationwide! So go out and PITAup, change the life of a child with Autism, the life you change, just might just be your own!!!

*Please note any links that are in green and underlined twice are being linked by the blog, and are not being linked by me and do not represent anything I am promoting.*

Monday, August 2, 2010

“By ‘alive,’ I don’t mean just ‘not dead,’

“By ‘alive,’ I don’t mean just ‘not dead,’ either. You’d think my mother would have been satisfied for me to live at home, tucked away from the world where she could protect me, but for her, that wasn’t living. She insisted that I be great.” Jonathan Morrow Author of

(I hope when your done reading you come back to read my thoughts on this blog and post your thoughts)

I really, really encourage you take a moment to read this link. It truly changed my life and I think you will want to share it with every parent of a child with a disability that you know!
I think sometimes we get so wrapped up in how the disability affects us that we forget how it affects our child and how our actions will effect the rest of their lives. The above blog was written by a disabled man whose doctors did not expect him to survive early infancy. In his blog he describes what his mother did for him and how it changed his life.
For me as a parent of a child with Autism, even before reading blog have always pushed my school district to the extreme for Austin. After the first year, Ed and I made our district move Austin to another district for appropriate services, when we finally returned to our district 3 years later we pushed for the program to change. Our child is the first non verbal child with Autism, who was not working at grade level, to be main streamed partial day in Kindergarten and 1st and succeed. I do believe the district did not think he would succeed, but he is. For me success is seeing the work you are doing at school or therapy, work its way into real life. For us what we wanted was socialization, for Austin to be able to make the connection with peers in and out of school. Can he go out and play on a playground today like a “normal” kid? No but his is trying, he waves to say hello and he tries to engage other kids we are getting there at almost 9.
This article always reminds me who I am fighting for. Since this blog is from the son's perspective of what his mother gave him, it puts things into perspective for me and what I need to do for Austin. Every time I read it is like the first time. It challenges me to go on and do what I need to do no matter how overwhelming it is, no matter how intimidating it is.

“When my elementary school principal decided that disabled children didn’t have a place in her school, my mom appealed to the school board and turned every board member’s life into a living hell for two years.

She won.”

How many PITA parents do you know that have stories just like this? I know a lot. I personally can’t wait to hear them all write a blog or tell their story just like Jonathan has on how we did something similar for them.
I know it Austin’s almost 9 years of life I have a few of these. My favorite is sitting at an IEP meeting and asking for Vision Therapy and at entire school district team and by team I mean two school districts looking at Ed and I and having the audacity to say something to the point of Austin will not like this type of therapy. Being me I responded with a smart arse response of, “I do not chose things for my children by what they like, otherwise my older children would be out smoking pot and drinking alcohol”. The room was quite and Austin got Vision therapy, which is in it self another blog and an amazing therapy!!!!!

So today my challenge for you is to book mark Jonathan Morrow’s Blog and when you feel discouraged and that there is no hope, pull it out and read it.
Remind yourself of how you want your child to tell the story of what you did for him or her. Honestly the only people our kids have that they can depend on is us. So go out and PITAup, change the life of a child with Autism, the life you change, just might just be your own!!!

*Please note any links that are in green and underlined twice are being linked by the blog, and are not being linked by me and do not represent anything I am promoting.*