Showing posts with label proloquo2go. Show all posts
Showing posts with label proloquo2go. Show all posts

Thursday, October 28, 2010

Things every PITA should carry in their purse or backpack


PITAup.com is making a list and checking it twice for things every PITA should carry in their purse or backpack:


1. GFCFSF Snacks
2. Baby wipes
3. Pull ups
4. A Sharpie
5. Post it notes
6. Autism Speaks tax return to hand out to business that support the evil blue puzzle piece
7. Bails bond person # who is Autism friendly
8. GFCFSF restaurant list
9. Talk About Curing Autism journey guide
10. CDC website print out of what is actually on the vaccine ingredient list
11. Most wanted pictures of Paul for “Pr” Offit & Nancy “the PharmaWhore” Snyderman
12. Pure Ayre
13. Houston Enzymes
14. iTouch
15. Proloquo2Go
16. First Then
17. Headphones
18. iTouch charger for the car and wall
19. Neil Z. Miller's Vaccine Safety Manual
20. Melatonin and pear sauce for administration
21. Activated charcoal
22. Arnica
23. Earmuffs
24. Business cards with your name, number and e-mail for future PITA’s you meet
25. At least one pack of all the samples you got from the DAN conference, just incase!

OK MAYBE, JUST MAYBE we need a rolling suitcase, just saying!!!

Feel free to list anything I might have missed!!!

Thanks to my fellow PITA’s on my Facebook list that contributed to this.

So until next time 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.*

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.*

Tuesday, May 4, 2010

How do you tell if your child has that problem and how does the gfcf diet help?




While searching for blog ideas, and what readers wanted to know about I was asked the following question…

“Some people believe that their kids autistic traits are caused by "gut" problems. How do you tell if your child has that problem and how does the gfcf diet help?”

For my child the answer was pretty easy. At 2 years 9 months he had never had a firm stool. So when we were given the diagnoses of Autism, we had already read about GFCF, and decided to start immediately. Within 3 months of starting diet, Austin had his first solid stool. For many parents constant constipation is also a sign.
This being said I have friends who swear their child never ever had gi issues and still benefited from the diet. Also children who will only eat gluten and casein filled foods as if they are addicted to them also seem to benefit from the diet.

In my mind every child with Autism and possible ADD or ADHD should try the diet for at least a year.

Since I really can only address how the diet has changed our lives here is some more about the diet from Talk About Curing Autism Now’s website.

Research by Dr. Harumi Jyonouchi shows that 91% of people with ASD who were put on a strict GFCFSF diet improved. Jyonouchi’s papers say that ASD children have an aberrant immune response to the dietary proteins found in gluten, casein and soy. This peer-reviewed research merely backs up what parents have been saying for more than 10 years. Countless parents report that the diet is dramatically beneficial for their child. The most common comment we hear from parents is that their child “came out of the fog” when we started the diet. Many parents report that their children began to talk or increased their speech with the diet as well. Although this is anecdotal evidence, the preponderance of is it massive and consistent, and deserves a trial by families.

While we would like to have more double-blind studies to back up the diet, the truth is that it’s a very hard thing to study and make sure compliance was 100% in both groups without putting each in a controlled environment. Most parents would not allow this. The few recent studies that have been done were designed to fail as they didn’t run for the full 4 month trial period (most just a mere few weeks), although parents report that 4 months is the turning point. Additionally, those trials still allowed soy and unlimited high-sugar foods.”

You can read more about this at TACA

For my child diet has not meant recovery, he is still non verbal and has Autism, but it has dramatically improved Austin’s quality of life as well as our family’s quality of life.

We received the diagnoses on June 15, 2004 and started GF the next day and the next day after that we went CF. At that time Austin was 2 years 9 months old. He slept 2 hours a night, he spinned, colored, and ran full force into walls the other 22 hours of the day. He never ever stopped moving. He also was a huge poop smearer. Austin had no eye contact and thought of us as nothing more then the furniture in our house. If we were not needed for feeding him or giving him a drink he would have never acknowledge us. He also would only eat wonder bread, macaroni and cheese, cereal, cheese and milk. We went through a gallon of milk every other day.

About 2 months into the diet I was about ready to give up, I really was not seeing anything, but everyone around me was. We had a play group that met once a week that summer to go to the beach, each week the other mom’s would comment on something new Austin was doing. As I was just about to give up, I like to say God intervened and handed Austin a piece of Wonder Bread. Within 20 minutes of that one slice of bread Austin started spinning again and started coloring on the wall. Two things I had not noticed had disappeared. I now know that I have learned nothing from the diet, but I learn everything from infractions. Things just seem to fade a way so quietly that you miss them.

Fast forward almost 6 years later, and now GFCF, egg free, apple free and on Houston Enzymes TriEnza chewables, and many vitamins and supplements. Austin is still non verbal, but will now sit down and watch a football game, a movie, and play with toys with very few times to get up and stim. His eye contact is amazing. He hugs and kisses his family, his eyes light up when he sees someone he knows. Austin knows a half dozen American Sign Language signs, and is now learning to communicate with the aid of an iPod Touch and Proloquo2go . He is mainstreamed and working on social skills 1/3 of his school day. At his birthday party last September it was his first year that he opened presents and enjoyed it. He loved finding new toys in every package. It was the first year he ever really played with any toy purchased for him. He may not always play appropriate, but he plays with them.

He is truly a different child then the one I had 6 years. It simply amazes me how many parents won’t try the diet because in their minds it is too hard. As the parent of a not recovered child with Autism, I can’t imagine not doing the diet. I can’t imagine how bad Austin would still be right now had I not reached out side my comfort zone and given it a try.

Here are a few books I recommend on this topic. They are easy to read and not like reading a medical journal, they are great starter books to introduce parents to diet and why it works for some children:
Healing Our Autistic Children: A Medical Plan for Restoring Your Child's Health by Julie A. Buckley

Enzymes for Autism and Other Neurological Conditions: Updated Third Edition by Karen DeFelice

Talk About Curing Autism Now’s section on GFCFSF.

If you’re on the fence about diet and enzymes, I highly encourage you to step out side your comfort zone and give it a try. It might surprise you.

So until next time PITA.

Tuesday, April 27, 2010

Big Shout Out!!!


Now don’t fall out of your chairs, I feel a compliment coming on here. Ok that part is not really that shocking, it’s for whom the compliment is for, that may surprise you.

I want to say how much I really and truly love Austin’s teacher this year. Her and the teacher of the 3-5 grade Severely Handicapped classrooms at Hope Elementary are outstanding.

Our teachers are so awesome because they are fundraising for every child in their two classrooms to have iPod Touches loaded with Proloquo2go and other apps on them. Ok every child except Austin. Austin is already getting one through the school district, even though it might be next year before we actually begin using theirs and stop using ours. (Rolls eyes, got to love the School district and how long purchase orders can take).

While to me this kind of action is not surprising, I think it may surprise many. I think a lot of teachers get a bad rap. Now I agree there are some bad teachers out there, I have had one or two, Mr. Hoyle comes to mind (I know all you CBAD grads are now laughing to yourself and hearing his monotone voice say, “Get rid of it”), but I think most teachers get into teaching for all the right reasons. Being the wife of a teacher I might be a tad prejudiced though.

Teaching is truly the worst customer service job out there. Not only do you have to please the parents, the students, the principal, and the public, you get to do it while being underpaid and in the times of budget cuts having to worry about losing your job. If you are a special education teacher or have any special education students in your class, you also get the worry of being sued personally if something goes wrong with implementing FAPE and IEP’s.

In customer service you generally only get to hear how you are doing, when you are doing it wrong. So today your PITAup challenge is to look and see if you have one of those hidden gems of a teachers, teacher’s assistant, or any school district employee who is doing an exceptional job and thank them. Maybe pick up a thank you card or some treat for them, but at the very least say it out loud to them and if you can within ear shot of their boss.

So to Liz and Michelle, I just want to give you a shout out and say thanks for all you do for Austin and all his classmates!!!

Until next time PITAup!!

Saturday, April 10, 2010

iPod Touch one of the best inventions EVER!!!


Wants the world to know how great the iPod touch is! Honestly it may be the best invention ever, at least for my household and a few of my friends’ households. It has even passed up the baby wipe and the Ziploc bag in my top two inventions ever, and you all know how much I love my iPhone, computer and internet. Funny thing is I should be blogging about http://proloquo2go.com/ which is awesome, and my friend Malinda would tell you it changed her life.

Malinda Cook says, “The proloquo2go program on the iTouch has changed my life as well as my non-verbal daughter! Since we started using the program in October 2009, she has been able to communicate her wants and needs much better. She uses the program at home as well as at school. I was able to customize it to her needs – proloque2go is so easy to use and program! I recommend it to anyone who needs a communication device for their child. There are 1000’s of icons that are not only up to date but familiar to children – no more stick figures. You can also download you own pictures easily. I highly recommend proloquo2go.”

We just got our proloquo2go.com in December and we are seeing nice progress in communication and we happen to think it’s great also. We especially love it since after 5 devices in 5 years we have one we can program our self and are not dependant on a speech teacher to do it. LOVE THAT!!!!

The part I never expected was games, or apps that can be downloaded on to an iTouch. As a wife of a video game addict and mother of 3 other children who also love to play video games, I love that Austin at 8.5 is now playing video games, even if they are just the toddler ones! I was often jealous of my fellow PITA’s who had kids that played video games and often wondered how much easier my life would be if my kid was a video game addict (how lazy does that sound? lol).

Well Thursday night I got that pleasure. We sat at quietly at That Pizza Place in Carlsbad, enjoyed adult conversation with out of town guests and Austin did not object. Ok he got up and tried to run a way a few times, but he sat and played for a long time. After 8.5 years of having Austin this was huge for us. Even my sister could not believe how well he did. If you haven’t thought about buying your kid an iTouch, I am highly recommending it and give it 2 thumbs way up!!!

Ok while thanking things that have us gotten here, I should include, we could not have done it with it out TACAnow.org, GFCFSFEFAF (ok it feels like a million things free), Houston Enzymes, Dana’s View, and all the wonderful PITA’s who showed me the way.

So as usual PITAup, and don’t be like my friend Nicole and think anything bad about up after the A. ;-)

Think of it like Cowboy up, lol. Change the world, be a PITA, and PITAUP!!!