What Is An AAC?

I get this question more than you can imagine.  We have been trying to get an AAC for Jadyne for over two years now.  No, it shouldn’t take this long, and for most families, it does not.  Thus, if after reading this post, you feel it could help your child, I urge you to look into beginning the process.  Typically, the timeframe for receiving your child’s device is only 24 weeks.

What Is It?

AAC stands for augmentative and alternative communication.  Simply put, they are electronic boards that vary in size and functionality that help a child with a severe communication disorder communicate with their world.  Remember, not being able to speak is not the same as not having anything to say.  AACs make it possible for someone without the ability to speak to get the words out in a way the rest of us can understand.

This is a girl just learning to use a Dynavox device.  Can you imagine how much her life will improve as she becomes even more familiar with the device?

Why Is It Necessary?

Academically, Jadyne simply can NOT even begin to perform at any level close to what she should.  In Language Arts, she can’t answer critical thinking questions like “What do you think Cinderella’s sisters should have done?”  She very well may know the answer, but she doesn’t have the speech function to get out the words.  So she fails.  In Science, she can’t answer whether a ml or a gram goes to a graduated cylinder.  In art, she can’t draw a painting of a place because she can’t understand that’s what she’s supposed to do based on a lack of speech.  The only subject she excels is in math.  Math is concrete.  A circle is always a circle; blue is always blue.  These kinds of things make sense to her.  Speech, for now, isn’t necessary in math.

Socially, Jadyne can’t answer kids when they ask her questions.  She’s quite fortunate to have a few friends that don’t seem to even notice Jadyne can’t talk at their level.  They talk for her.  They engage in imaginary play with her.  She enjoys the interaction.  Unfortunately, not all children are so kind.  Some children get very frustrated with her.  They think she doesn’t like them because she doesn’t talk to them.  She just can’t. 

At home, tantrums abound.  Can you imagine not being able to communicate your wants and needs?  If you’ve ever witnessed a stroke patient’s frustration knowing what they want but not being able to express it, you’ll have an idea of how she’s lived every day of her life.  After almost eight years now, though, Jadyne and I have our own ways of communicating.  I understand her approximations (not real words, but similar to words).  She engages with me through gestures and eye contact and minimal sign language.  That interaction is a rarity, though, and doesn’t exist outside her comfort zone. 

The Myths of AAC

•          AACs are only for kids that are completely non-verbal.  Ah, NOPE!  AACs are for anyone with a speech disorder. 
•          AACs would be used as a crutch for kids that have any verbal ability; they’d lose speech.  Ah, NOPE!  In fact, the children engage with the devices.  They repeat the words they hear on the devices, actually building their vocabulary!
•          AACs are too expensive; I could never afford one.  NOPE!  There are a couple ways to get a device without ever spending a penny.  I’ll explain that further down.
•          AACs will fix all my child’s speech problems.  Again, NOPE!  AACs will greatly assist, but if your child has a severe speech disorder, your child will always struggle in this area.  AACs are meant to reduce the stress incurred from their inability to communicate effectively.  They work great, but they don’t solve all problems.  A Total Communication System is necessary throughout life.

  “Total communication [TC] is the combined use of signs/gestures/pictures with speech to facilitate communication development. Its purpose is to provide a language system so [the] child may communicate with others and learn that needs can be met through communication”(Kumin, 1994). 

How Do I Start?

1.        Contact a specialist in AAC devices and request an intake evaluation.  This is a great link to find someone in your area.  http://www.slplocator.com/FindAnSLP.aspx
2.        Take that evaluation to your school and request they provide the trials for your child.  If they give you a hard time about this, contact me.  I went through it myself.  They HAVE to comply with that evaluation.   Your child will try various devices over a 24 week period to determine which is best.
3.        Once the device is decided upon, there are two options.  One, you can request the school purchase the device, but if you go that route, the school owns it, and most likely, your child will never get to bring it home, although some schools allow it.  Two, you can go through your insurance company to get a device purchased for your child, and that’s the best route.  In order to do this, you will need a prescription from your child’s PCP.  If you want more information, again, contact me.  (There is a "Contact Us" link at the top navigation bar that will give you all my contact info.)  I will be more than happy to assist you in the process.

Find a local Dynavox Sales Consultant http://www.dynavoxtech.com/products/sales/default.aspx
They can help walk you through the process, provide all necessary forms, and offer lots of support.

Are You a "Curebie"? I Am!

Yesterday, I bought a book called All I Can Handle by Kim Stagliano. I have felt first hand, the deep levels of frustration, as in my post "What Do You Parents Do to Prevent Disasters?", as well as the moments you just know you're the most blessed parent on the planet for getting to raise this amazingly tenacious little person, as in my most recent video "I Hear You". I purchased the Nook version of the book based on those facts.

The author has THREE daughters with autism. Part of me was hoping to curb my hedonistic self-pity sessions on future disaster days (because oh they WILL come!) by recalling the old theory, "It could always be worse." I mean if she can do it with three daughters. I sure can with one, right?

The other reason that led me to purchase it was the references to the author's humor. Laughter is what keeps me from cracking under all the pressure. Sometimes, when all hell breaks loose, and I walk into my kitchen at 3am to find my supposed-to-be-sleeping child covered head to toe in permanent marker and cereal scattered across my table with peanut butter caked in her hair, in moments like those, without laughter in my heart, I'd probably have died from a coronary disease by 26 years old.

The book has lived up to the reviews! It's laugh-out-loud hilarious and refreshingly honest. Thus far, my favorite statement came from pages 27-28. I'll include the quote below, personalizing it, I encourage all of you to as well. If you're a D-mom (mom of a diabetic child), personalize it to the disease you take head on for your child. Switch the name out to be your child. Educators and therapists can do this exercise, as well. Switch out "parent" for your occupation. Think of one special kiddo that's really touched your heart, and put in their name. I say we start a "Curebie Nation." Ask yourself, "Am I Curebie?" I know I sure am!!!

I'm a "curebie". That's an autism parent who believes that, in our lifetime, we will be able to bring these kids to a point where they blend in with their peers and can live full, independent lives--through a combination of medical treatment, therapy, schooling, and a rosary that stretches from Connecticut to California. Call it recovery. Call it cure. Call it remission. Call it pasta e fagioli. I don't give a crap what it's called. I'm not going to argue semantics. I just want (((Jadyne))) to be able to live a garden-variety, normal life without needing an adult to keep her safe....I want a cure for her, damn right. What kind of parent would I be if I didn't? I'm just willing to admit it in public. If people think that means I don't love my (((daughter))) the way (((she))) is, screw them. There. Honest enough?1

I read my fair share of written material. I go to school full time. I read for knowledge, and I read for pleasure. I've read countless books on Autism Spectrum Disorder, parenting, relationships, and on and on. This book is by far one of the most well-written and most captivating ones I've purchased in a long time. Five stars and a must read!

Don't be shy to post your "curebie" comments, too!

1 Reference:

Stagliano, Kim, and Jenny McCarthy (Foreword). All I can handle-- I'm no Mother Teresa: a life raising three daughters with autism. New York: Skyhorse Pub., 2010. Digital e-book.

MobiGo Breakthrough

For Christmas, I bought JJ a MobiGo and Jadyne an Ereader, both manufactured by Vtech. Just the other day, Jadyne picked up JJ's MobiGo and sat in front of me. Tears streamed down my face as I realized my child without many words indeed was capable of complex thoughts. She manipulated the touch screen boards with ease, correctly solving multi-step processes, and best of all, she taught herself.

For several months preceding this, I was distraught, basing her progress on reports from the school. I worried she was hitting this "plateau" I've heard so much about from all the specialists over the years. What if this was it? What if after all these years, she doesn't get any better than today? Is it time to accept this is her potential?

Such is the life with an autistic child. It is full of heart-wrenching blows and tear-streaming joys. For every moment I have ever been faced with a perceived disappointment, it has immediately been met by Jadyne breaking down some barrier, showing me "This isn't it.....I'm not done fighting, mom." Wow, just wow, that child is amazing!

To view a video on the MobiGo, visit this link:

http://www.youtube.com/watch?v=mUntpIpBC30