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.

"The Wind Beneath My Wings"

Believe it or not, once upon a time, I was a cumbersome, confused, and timid parent. I knew something just wasn't right, but I still walked out of that doctor’s office time and again that first year feeling some sick sense of relief that since he told me my little girl was still in the normal range then it must be true. Well, just how did I get from there to here?

My first “teammate” in this journey was my grandmother. It was shot day for Jadyne. In fact, if my stress-strained memory serves me right, I believe Jadyne was about six months old. My grandmother came to the doctor’s office to see her great-grandbabies. Both my cousin and I saw the same pediatrician, and that day we had simultaneous appointments. My grandmother didn’t have that grimace face out of pity for Jadyne’s tears, though. There were no tears. No, her grimace was a look of shock and wonder. This was no “tough kid” as our pediatrician had been claiming. “Jackie, that’s not normal for a baby not to cry getting shots. Something’s wrong with her!” my grandmother exclaimed. Still I had no clue, not even a guess at that time, what was the cause, but at least now, I wasn't the only one seeing a problem. Thank you, Gram.

A few months later, after switching pediatricians, and after formal audiology and pathology would confirm there was some problem definitely present, we started Early Intervention. These therapists were amazing! They didn’t just do their jobs, they loved their jobs. They were underpaid; their cars were beat to hell and back from all the travel; they were overqualified; and they were miracles for Jadyne. Jadyne was 14 months old by the time they were brought in, and for 12 of those 14 months, I had been chirping (ever so quietly) that something just wasn’t right. After just the initial visit, the early intervention staff gave me a new phrase—Defensive Sensory Integration Disorder. It didn’t count as a “real” diagnosis because it didn’t come from an “expert” with fancy letters like PhD or MD after his name, but to me it was golden, to me it was a tangible opponent. I was no longer fighting a ghost. In the future months and years, the early intervention staff would lean heavily on the consideration of autism. In fact, although they were denied over and over by the doctors any diagnosis whatsoever for Jadyne, the early intervention staff began treating her for autism anyway. The early intervention staff introduced us to the Wilbarger Treatment and helped us implement it. Jadyne emerged. They also helped me to deal with the new offensive sensory behaviors, to recognize that Jadyne’s “behaviors” were really just reactions to her stimuli in this world. There is a small window of opportunity that we have to reach these kids. Thank you, Valerie, Amy, and Julie.

Unfortunately Early Intervention was only available from birth to three in my area. I was able to attain an Autism Spectrum Disorder diagnosis of PDD-NOS when Jadyne was four years old. Within six months, that diagnosis would change to autism. My next hero in this story is a particular school. My company had me stationed in southern Ohio. The Early Learning Center in South Point, OH was, and is to this day, the best traditional education system I have ever encountered. They didn’t delay the process by requesting all their own evaluations. They simply accepted the myriad of evaluations Jadyne already had. She was in school within a couple days after calling them. They didn’t fight about a bus. No, riding a full size bus and providing her an aide were a given. The teachers were phenomenal. You could just tell how much they loved these kids. The school had a "blue room" with sensory and physical therapy equipment. Children weren’t scolded or punished when they were acting out; they were taken to the sensory room to relax and calm down. Jadyne even had a friend there. If one single school could produce even half the rapport and results of the staff of this school, Jadyne would probably still be in a traditional school setting. ELC let me know that traditional schools can provide an extraordinary educational experience for children with autism. Thank you.

Somewhere in this time, I joined a budding organization through Myspace called Banish Autism Discrimination (B.A.D. Moms). I loved the feisty, tenacious mindset of the founder, Kimmie. She was sick and tired of the discrimination her son faced in even the most innocent of public places, like a movie theater. She had enough, and she was speaking out, and others were listening. The organization flourished. The stories poured in of similar discrimination stories. B.A.D. moms began to join together with a newfound herd power. Letters and calls would flood an offender’s place of business. No matter how big that organization got, Kimmie always took the time to respond to personal messages. I probably owe her a mansion in the amount of time she put into guiding me towards answers for Jadyne during those early years. I try to "pay it forward" now through things like this blog. She is simply brilliant. Through her, I learned to stand and fight. B.A.D. Moms gave me the ability and know-how to research answers until I found them. They groomed me into the advocate I am today. Thank you, B.A.D. Moms.

It took a tremendous amount of support from family, organizations, and professionals to get us through. That need is never satisfied. I still maintain my involvement in support organizations and my hunt for new information and products. If that was how I got here, let’s look at where I am now, and what keeps me from falling flat on my face today.

Parents with multiple children and busy schedules can find the task of going to a support group daunting. It’s not that we don’t realize the power in numbers of people experiencing our same life. It’s just that it’s so tough to coordinate the ability to go to a traditional support setting. The World Autism Community does a stunning job of resolving that issue for parents. I consider it kind of the “Facebook” for the Autism Community. After you register (100% free site), you are given the ability to join various forum groups on specific topics like “Therapies”, “Multimedia”, and “You Gotta Laugh”, just to name a few. Parents from all over offer advice on any topic you throw at them. If you’re affected by Autism Spectrum Disorders and you’re feeling overwhelmed and alone, please know you are not alone and come join us on The World Autism Community. Even if you feel like you got it all together, still join us. You could make the difference in someone’s life today.

For years, I’ve dreaded trying to find HONEST information on autism. As a parent on the front lines, it’s imperative I receive accurate intelligence, but when the big dollar pharmaceutical companies and organizations like the American Academy of Pediatrics get involved, the mainstreamed news circuit can be flooded with a “cereal box” tone.

Silly news show, “Trix are for kids!”

When the news story of Wakefield’s research broke, I was irate. Suddenly, people were talking about autism, finally. However, no one was talking about the successful 1322 hidden cases in the US Vaccine Court where the courts ruled vaccines had caused brain damage, including autism. Let's pause for a second. Say that number aloud. One THOUSAND three hundred twenty-two cases PROVEN, not in some backwoods no-name town court, but the UNITED STATES court that vaccines (which particular one and what particular element is still up for debate) have caused brain damage, including autism. No one was talking about the book “Don’t Drink Your Milk!” written by the Director of the Department of Pediatrics at Johns Hopkins School of Medicine and Physician-in-Chief of the Johns Hopkins Children's Center. No one was talking about the way these kids fall through every crack—insurance that doesn’t pay, doctors that don’t listen, medicine that doesn’t exist, schools that can’t produce, and on and on. No, instead a deluge of attacks on cautious vaccinators flooded the national news and social media sites. No one was talking......except a few, a few organizations like Generation Rescue, Age of Autism, and 14 Studies pressed forward in a crusade for truth.

I still check the national news and “majority” viewpoints. I do it to stay balanced. However, when I want to hear the real truth, I go to Age of Autism. It’s a no–frills, no “trix”, and reliable resource for families affected by this disorder. They’re not afraid to ruffle some feathers. That’s what journalism was supposed to be about, the truth. When did it become about giving the public what they want to hear? Aren’t there soap operas still on television for the fantasy-minded individuals? Thank you, Age of Autism, for meticulously addressing and correcting the “cereal box” media. We need more like you!

To my family, my friends, to Early Intervention Specialists, to B.A.D. Moms, to the Early Learning Center, to The World Autism Community, and to Age of Autism..

THANK YOU!!!

Review of The Dr. Oz Show "What Causes Autism?"

Preface:

Before we begin this review and debate, let's get my personal view on the issues forefront. I know without a doubt, Jadyne's autism has a genetic factor. My brother has PDD-NOS, my mother's brother spent his childhood bouncing in and out of hospitals for "problem behavior". The list goes down the line. I am very concerned of the genetic component to autism. I worry about my children's children. As far as environmental factors, and more specifically vaccines, I do NOT advocate that parents not vaccinate their children. However, I do find the debate relevant. I find the questions unanswered, the jury still out. Thus, I chose to be cautious vaccinating my last child, JJ. I delayed some of his vaccines in an alternative schedule. I do KNOW autism has a genetic component. I further believe strongly there is an environmental component unidentified as of yet. I do not know if vaccines is that element, but neither do the doctors or scientists! For that reason, the debate needs to continue, the research needs to continue, and parents need to remain informed and cautious with what toxins we introduce to our children's innocent systems. I choose to remain neutral and seek further investigation. My personal feeling is extremism towards either side would be disastrous be it the continuation of blindly vaccinating children without fully understanding the long-term effects of those vaccines or a pandemic of panic leading to a loss of our herd immunity from parents refusing vaccinations. Both will lead to the demise of our future generations. This is a very serious topic!

Staying in the middle isn't the popular approach. I've taken heat from one doctor but even more from other parents. Doctors frown upon their "expertise" being questioned. Some parents have made up their minds that these vaccines ARE the cause, and they discourage anyone vaccinating children. The bottom line is if the fact that I question doctors, that I demand more research, that I choose alternative solutions makes you think I'm a bad mother or don't care about my kids, well personally, I don't give a damn. I don't do this for your approval. Your approval won't make my daughter speak in sentences. Your approval won't ensure my neurotypical (to-date) son doesn't have a child with autism. Your approval or disapproval doesn't change this life for us at all. I do this for them, and as every parent out there, with or without a child with a disability, I do the best job I can with the information I have available.

On Thursday, February 17, 2011, The Dr. Oz Show aired a segment called "What Causes Autism?". The show did an amazing job of putting together a very diverse panel of physicians and scientists and parents. The result was a highly emotionally charged but very useful and informative debate. Even the audience itself was uniquely comprised half of parents of children with autism and half of parents that were concerned their child may have autism.

Click image to enlarge view.

The audience led the most interesting part of the show. These parents aren't rolling over when they seek help and the door slams shut on them. No, these parents all still believe the answer is still out there, and they're fighting with everything they've got to find it. There was a sadness and an anger that resonated with each of the parents' statements. This disorder is damn tough on families! I don't know how it can ever truly be conveyed through words, blogs, videos, or any other form of media. No parent ever wants to hear their child even has strep throat, and those that have to hear their child has a lifelong condition are crushed. The news for autism is presented with even more devastating words, however.

"Your child has a lifelong condition. There is no cure. We don't know what causes it. We don't even really know what it is. It presents differently in each child, so we just call it a spectrum, but that makes it hard to even tell you what to expect. We can't. There is no medicine to help her. Some are being used to treat symptoms but no medicine has been developed for this disorder itself. Your child will live but will not have the ability to interact with the world we live, a permanent emotional vegetative state per se (so the doctors tell you, more on that in a bit!), and while we can't tell you what to expect in your child, we can state that statistics show an overwhelming probability that your relationships will end and you will be financially bankrupt."

I know when Jadyne was diagnosed with epilepsy, there was a different tone with the diagnostic team. They were confident, definitive, and they laid out a whole set of resources and solutions. I left the hospital with a bag filled with pamphlets, brochures, and even charts on epilepsy. Within a week of research, I would know all I needed to with what it was, how to treat it, and felt comfortable that treatment would ensure a normal life for Jadyne. This was not good news for Jadyne but the science was. There were answers. There were medicines, lots of different ones to try even. The insurance companies paid for the treatments. There was even a test to state without doubt this is what she has and this is the TYPE she has. Autism isn't like that. There is no test, there are no medicines, and the literature is minimal. In fact, the list is endless of parents just like me that are out there finding some medium to present this information because even just five years ago it was a struggle to find small answers. The parents are on the front lines, but they must have armor made of kryptonite because they don't go down, no matter how hard the blows are along the way. They stand and fight.

The professionals panel was diverse and very informative. I was excited to see Alison Tepper Singer, the founder of the Autism Science Foundation and mother of Jodi, a now 13 year old girl with autism. (We first met them on "Autism Everyday" when Jodi was eight.) Dr. Bob Sears, author of "The Autism Book" led the debate for the alternative treatment side. The audience cheered him in a few spots of the show. Dr. Ari Brown, spokesperson for the American Academy of Pediatrics, however, was met with let's say a less than welcome response. Dr. Irva Hertz-Picciotto from UC Davis spoke on possible environmental causes of autism. In addition, Dr. Oz had a team of pediatricians present for additional views.

Dr. Hertz-Picciotto's input was unimpressive to me. Yes, autism COULD be caused by mothers living close to the highway, or it COULD be caused by blow-drying our hair or eating bananas or skinny-dipping for all we know. I'm sure if you did a study on millions of things, your results would show an "increased chance" for autism in many brackets. I'm glad she realizes the cause of autism won't be one smoking gun, but her research just didn't have the wow factor I'd hope for with all the funding she receives from the National Institute of Health.

Dr. Ari Brown was definitely in an uncomfortable position. She was met full force with opposition by the emotionally charged audience. Honestly, though, my pity doesn't go far for her. This disorder does not need doctors and associations that have closed their minds to possibilities of the causes. Just because Dr. Wakefield's research has been proven fraudulent does not mean that vaccines still don't attribute to autism. One audience member made a great point by stating that mercury has been extensively researched, but what about aluminum? What about all the other things besides mercury in our vaccines? Dr. Bob Sears offered an alternative to parents of spreading out their child's vaccinations. Dr. Oz stated that he did this for his children. I will admit, I did this for JJ. Instead of him getting his shots on the standard schedule, after consultation with a pediatrician comfortable with alternatives, we chose to delay additional vaccinations until JJ was "out of the water" so to speak with an autism diagnosis.  His doctor was comfortable with this, but warned before school-age we'd have to face the decision if the jury was still out regarding vaccines, but that this would at least give us some more time to "let the science catch up" as he said.  I can't tell you if that's why he doesn't have autism and his sister does, but I can say I'm not sitting here wondering now if the vaccines caused his autism. No, we don't want to lose our herd immunity and not vaccinate any child. However, parents need to know the risks and have the ability to both ensure their child's safety from preventable diseases while not putting them at risk for a lifelong condition.

I don't care what you hear or read. I don't care how the APA or AAP fluffs it up.

THEY CAN NOT (and do not if you listen carefully) SAY WITH ANY GUARANTEE THAT VACCINATIONS DO NOT ATTRIBUTE TO THE RISE IN AUTISM

They can say Dr. Wakefield's research is fraudulent. They can say over 20 studies have stated that vaccines don't cause autism, but as Dr. Sears pointed out, 18 of those studies were conducted by pharmaceutical companies. I was irate at Dr. Brown's response to Dr. Oz's question when he pointed out there are studies and campaigns on newborn HIV and so many other things, so where is the effort into autism?! Her response was the dodging response of any politician. "It's there. We do care about kids." If it's there, why aren't you more specific? Truth is it's not there in any capacity that will have an impact for our kids. It's not financially reasonable for the medical industry to spend money on research for a disorder and then lose money if a cause is found not to be treatable with their medicines and worse yet if the cause if found to BE their medicines. My response to that is simple. I don't care about the medical industry's finances anymore than they care about the financial bankruptcy of all these families with autism. Fix it!

Dr. Bob Sears gives us all hope that some doctors still seek truth. He offers patients alternative vaccination schedules. He encourages a gluten-free/casein-free diet. I'd take any of my kids to him with confidence! I love doctors that say, "We just don't know." How about it? We just don't know. That's the truth. The truth is not a doctor trying to strong-arm a parent into a decision by stating results of studies that suit their viewpoint. The jury is still out. That's the truth. So while we continue research, let's err on the side of caution.

Alison Tepper Singer was my favorite part of the show. I can't say I disagree with one thing she said. She respects the science, studies the science, works for new science, and she also lives this life every single day. She has a unique position of seeing both sides of the debate with a clarity we could all only dream. I feel confident her research will lead to answers. I urge anyone to donate to the Autism Research Foundation.

Autism Speaks declined to go on the show because they wanted to talk about insurance reform and treatments for those that have autism. I will say, while I am tremendously grateful for Autism Speaks, I found this disturbing. I'd have to agree with Dr. Oz, "How do we get there unless we start here?" Autism Speaks's position reminded me of Jadyne's pediatrician when her tests results first started coming back, "Don't worry about why, just worry about treatment." If I had followed his advice, she still wouldn't have a diagnosis. Please understand the tremendous positive impact Autism Speaks has day in and day out. I in no way am bashing this amazing organization or their focus. However, I didn't find their response appropriate in this one instance. I believe Autism Speaks is a priceless resource for the Autism Community, and I would have liked to hear their part in this debate.

All in all, thank you Dr. Oz for leading this very balanced debate. The more exposure we have to these topics, the more people will care, the more people will act.

Click here to watch Part 1: Three families share their stories and their struggles.

Click here to watch Part 2: Are vaccines to blame?

Click here to watch Part 3: Pediatricians discuss where they stand on vaccines.

Click here to watch Part 4: Dr. Oz reveals what he did for his own children.

Click here to watch Part 5: The role of environmental risk factors.

Click here to watch Part 6: Older mothers and autism – is there a link?

Click here to watch Part 7: Warning signs every parent should know.

(All links will open a new window on http://www.doctoroz.com)

Team Jadyne Video

Please repost for us. Thank you!

Photo and video editing at www.OneTrueMedia.com

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GREAT GREAT GREAT Awareness PSA Videoby National Autism Association

...and THIS is why we walk!!!

Please share this!

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Join Team Jadyne

It's that time of year again. How exciting!

Please register to Join Our Team!

12th Annual Pittsburgh
Walk Now for Autism Speaks

Saturday June 4, 2011

The Walk Now for Autism Speaks event isn't just about the donations. It's a whole lot of fun, too! The first time I saw just HOW many people attend this event, I was in complete awe. It's a family-friendly event, too. The pre-walk event has booths set up with free food, activities, games, and a variety of vendors. They even have a kids tent area. (One year we didn't even make it 1/4 mile of the 5k walk. Jadyne just could not handle the crowds. The kids tent was PERFECT for her with sensory activities and quiet play.)

What if I can't walk 5k?

That's right, technically it's a 5k walk, but it's ok if you can't make the trek. There's other ways to help our team fight autism!

• Just showing up to support the team is a huge help!
• Attend our meet and greet with none other than the guest of honor herself, Miss Jadyne. It's a sensory friendly finger painting event. (Please wear old clothes.) We make signs and banners and even team t-shirts.
• Ask your local businesses to let Team Jadyne have a donation jar near their register. We'll supply the flyers and materials!
• Post our link http://tinyurl.com/teamjadyne to your personal webpage, blog, social site, or twitter.
• Talk with your family, friends, and co-workers about us.
• There is no such thing as a donation too small. Please donate if you can, but donations are NOT required. Every little bit will help add up to our team goal of $1,000. Visit our site to donate online or to print a donation form for mail-in donations.

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“Your child has autism.”

These four simple words define the facts. They are useful in explaining the past but they do not predict the future. They do not convey the devastating toll that autism has had on our family nor limit our determination to overcome this disorder. They are words that a new family will hear every 15 minutes.

By participating in this event, our hope is that we will soon hear “Your child no longer has autism.”

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Together we can do this!

Email Us at teamjadyne@gmail.com

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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.

Cyber Charter School Coming Up!

The not-so-official official Kaplan / Agora Learning Center

Jadyne's desk set up right next to Mommy's

Big Circles....Just having fun.

Erase (She gets so excited about erasing the board!)

Now, independently drawing straight horizontal lines.

Reported most recently she could not.

She's doing it here unsolicited.

Jadyne's Workstation

I'm using the "reliability method" of letter recognition.

M, R, and V always keep their sound,

as opposed to "unreliable" letters like s, c, and y

She picked it RIGHT up, I mean within minutes!!

An Alphabet Banner

Another Visual Aid

She matches her cards to the banner when prompted.

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Update: February 17, 2011

We got the rest of the school books and supplies in today. I had to rearrange things, find some storage space, but now I think it works! Here's the updated pics.

Jadyne trying out her new "Math Shape Cubes"

She is really enjoying them.

Been playing with them 45 mins straight now!

The Revised Version of Jadyne's Workstation

Will Jadyne Ever Live a Normal Life?

I'm asked this question often. People ask detailed questions, too.

• "Will she ever drive a car?"
• "Will she ever go to college?"
• "Will she ever get married? Have a family?"

The list of these futuristic questions is endless. Truthfully, I just don't know. Only Jadyne will be able to show us her full potential. My job as her parent is not trying to predict her potential but to ensure no other forces limit her potential, such as under-concerned doctors, ineffective educational systems, and even the uneducated general public to whom she is exposed at Wal-Mart, the grocery store, the park, and anywhere outside our home.

What I can say for certain is that having autism is not a death sentence for a "normal" life. I have even received the very insensitive question, "What is she really good at? You know, like Rainman. Autistic people are idiot savants, right?" If you use this term, I beg you please eliminate it from your vocabulary. If Rainman is all that comes to mind when you hear autism, then I beg you to subscribe to my blog to find the truth behind autism.

All of this comes about after a recent IEP review, progress report, and meeting. Jadyne's goals were always set low. During the initial IEP meetings years ago, I stated I felt her goals were too low, but I was told not to fuss, that it's best to set her goals low so that she can exceed them. I found this acceptable, and we moved on. However, Jadyne's IEP review states, "Jadyne is cooperative and pleasant and eager to learn." It further states, "Jadyne has minimally met her goals." I think this needs re-worded to be "The staff and curriculum presented have failed to meet Jadyne's low-balled goals due to an inability or unwillingness to learn the language of a cooperative and pleasant child who has shown great interest in learning our non-autistic ways." No, instead we blame the "cooperative, pleasant, and eager to learn" child implying she has failed.

My darling Jadyne, I hear you, even in the absence of your words, and I'm trying to enter your world to help you gain skills that will make this non-autistic world better accept you.......................Love, Mom

In conclusion, to give hope to those who want Jadyne to succeed in life, I'd like to highlight the success of a woman with autism, an autistic savant, Temple Grandin. Temple did attend college, and even earned a graduate education. Her career has included being a professor of animal behavior, designer of animal facilities worldwide, celebrated writer, researcher on autism, and inspirational public speaker. Her first publication in 1986 Emergence: Labled Autistic describes life for an autistic person inside our verbal and emotional world, and her second publication Thinking in Pictures: My Life with Autism, released in 1996, gives us an insider view on the thought processes of someone with autism. Reading her description of how her mind works, I saw many similarities to Jadyne's behaviors.

Finally, I urge you to view this video. It is the courageous attempt of one autistic person to translate their language for us to understand.

http://www.youtube.com/embed/JnylM1hI2jc

What Do You Other Parents Do to Prevent the Disasters?

Over the years, there have been disasters after disasters due to Jadyne's autism. Some were near deadly, others very costly, others just plain maddening.

• 2 yrs old: I wake up (thank GOD) in the middle of the night to find her playing in the middle of the kitchen floor with all the cereal off the shelves dumped on the floor, just playing like in a sandbox, like nothing was wrong, although she had turned ALL THE KNOBS ON THE GAS STOVE. We all could have died if I hadn't awoken. No noise awoke me, just a sense something was wrong.
  SOLUTION: Per her Master Level Behavioral Therapist suggestion, I put a lock on her door to make sure at night she stayed where I put her. Not long later, a babysitter called CYS stating I was abusing her for locking her in her room. CYS never even opened a case, but this was only the beginning. CYS has been called probably 20 times in the past 7.5 yrs over similar things. No I'm not abusing her; I'm keeping her from killing herself and the rest of us!
  
• 3 yrs old: I had taken the lock off her door due to that idiot babysitter. I got a call at 2am from my neighbor below me asking me where Jadyne was. I lived on the 3rd floor and her 2nd floor bathroom was "raining". There was Jadyne in the middle of the floor in the hallway once again playing rubbing her hands in the water like nothing was wrong. She had stuffed a shirt in the sink and turned the faucet on. $1800 in damage. Mind you I was a single mother working 80 hr work weeks just to make ends meet.
• 4 yrs old: She got into paper ripping. She'd rip an entire telephone book if she could find one. There would be millions of pieces all over the place.
• 5 yrs old: This was the fridge time. I had to put locks on the fridge. It was a challenge to find a lock she couldn't figure out how to undo. She'd have eggs broken on the floor, milk spilled. She'd get into the pantries, had to lock those too. At one point I literally had to SCRAPE glued flour off my kitchen floor. Again, it was a challenge to find a lock she couldn't undo.
• 6 yrs old: This came the fun time (not so much!) Fecal smearing. She had done it occasionally before, but it was worse than ever. Any chance she got she would spread her feces from her diaper all over her walls, her hair, her floor, her bed. I actually had to burn her mattress, and I scrubbed the walls so much the paint actually began to come off.
• 7 yrs old: Now she's fascinated with writing. She colored all over her bedroom walls before. We can hide the crayons all we want, but it just takes one pen left out, one person forgetting the disaster that can occur, and she's off to the races with that writing tool. She'll cover a wall, her arms, her legs in just minutes.

Just lately, I don't sleep. I sleep 1-3 hrs and only at night. The other night I woke up at 3am, and she was up. She had gotten into the kitchen, found an almost full container of whey protein powder and dumped it all over my carpet. Another morning, I awoke after her. She had gotten into my office and although she didn't rip my papers, completely disorganized all my papers in all my file folders. She also spread toothpaste everywhere. While I was cleaning up a mess she made in the basement, she got into my red nail polish upstairs (while she was SUPPOSED to be watching Dora, her favorite show). She painted my window and desk with red nail polish, also.

It may seem to a NORMAL parent, as I've heard 10k times, you just aren't watching her. Keep a better eye on her. Right. And then when do I do laundry, cook, clean up her messes, clean up normal messes, vacuum, do normal household duties, sleep? Apparently never.

She did GREAT while her brother was at his father's and she had my one-on-one attention. However he was very sick this week. He needed more of my care. So she's decided to lash out. It's so aggravating.

Any other parents that have gone through this that have answers, please I'm all ears. Any parents without a disabled child, please keep your comments to yourself. Don't care if that sounds harsh, but I've heard all your uninformed opinions before, and they simply don't apply to this lifestyle. Thank you.

Homeschooling???

Education has been a huge issue from the beginning with Jadyne. I've heard so many similar stories. You would think if 1:150 kids have this disorder (and that number is very liberal) than the schools would be equipped for what our kids need. After all the federal government has put protections in place like Free and Appropriate Public Education (FAPE) and Least Restrictive Environment (LRE). Then why is it such a struggle?

The sad truth is most parents aren't aware of their children's rights, and if the parent's aren't aware, who is there to make the schools aware. Then what happens when a parent that does know comes in? That parent becomes the bad guy for requiring the schools to implement programming that should have been put in place 30 years ago.

Because of my career, which I did eventually leave to stay home with Jadyne, I moved a lot and got a lot of exposure to a variety of education systems. Some were great; some were just a nightmare. What I've come to realize, though, is NONE provide the level of care I can for Jadyne, not because of their own inadequacies, some teachers just rocked, but because of Jadyne. She simply doesn't respond the same to outsiders as she does to me at home.

Recently, I began to realize, although it will be more difficult on me (I do kind of relish that time she's in school), I feel like I'm cheating her if I continue to put her through the public school system. However, once I realized this I was bombarded with more and more decisions.

Homeschooling gives you complete control of your child's programming, but you get very little assistance financially or educationally from the school system.

Public school, well is public school. She's gone 8 hrs a day and brings home an IEP progress report every so often saying how thrilled they are she can identify 6 letters at 7 years old.

Then there was a middle option. Cyber public school. Even in that there are two options here in PA. I chose Agora. Jadyne will be starting there soon. They will provide her a computer and all materials. They will adjust her programming to suit her needs. She'll be home with me. I'll be given support through a para-educator along the way. I will be considered a teaching partner, not just a nagging parent. There are multiple homeschooling parent support groups and co-ops around my area. She'll still be able to attend field trips and the like. I'll enter her into Special Olympics for added socialization and physical activity. Instead of an 8 hr day at public school, we'll be done in 3-4 hrs each day. That will leave us plenty of time for other activities such as sensory therapy, speech therapy, and even music classes. We're excited for this change. =)

What is Autism?

Best video I've ever seen describing a life with an autistic child. "Autism Everyday" created by Autism Speaks

http://www.veoh.com/browse/videos/category/educational/watch/e133765ejW4nXnh

The simplest answer is that autism is a neurological condition that affects social, communication, and behavioral areas with stereotypical behaviors presenting. However, no one child with autism is the same as another. Therefore, I can only speak for what autism is like for Jadyne.

For Jadyne, the symptoms were clear early. At 8 weeks old, she still was not tracking objects with her eyes. Worse yet, her pupils were continuously dilated. My first concern was she was blind. Preliminary tests would rule this out but not explain this anomaly in her development. This continued for years, milestone after milestone not being met on time or not at all, test after test proving the milestone had not been met but without explanation as to why.

Probably the most notable and memorable of all this testing was pathology and audiology. Formal testing done at Children's Hospital of Columbus, OH showed Jadyne could indeed hear, but she had no level of receptive or expressive language. I asked both the specialist and her pediatrician how this was possible. How can she hear but not understand nor express, not even repeat, not gesture, nothing? It was clear to me, even then, even in my complete lack of understanding at that time of neurological processes, her brain simply wasn't processing what was entering it through her ears. Still yet, I was faced by impasse after impasse from doctors with the ever wonderful statement "We don't know. Let's just get her into therapy. Don't worry about a diagnosis. Just worry about treatment."

In treatment, the therapists begged for a diagnosis, while the doctors just wanted therapy. I was caught in the middle of a debate, unknown to me, had been ongoing for many many years. I fought to get Jadyne this elusive diagnosis, as the therapists were quite convincing that the earlier Jadyne was diagnosed, the higher her potential would be placed. Finally, after almost five years, Jadyne received her Autism Spectrum Diagnosis (first just PDD-NOS, Pervasive Developmental Disorder Not Otherwise Specified), and that launched us into the ASD community. Just a month later the American Pediatric Association announced screening would be mandatory for all children at the ages of one and two years old for............autism.

For Jadyne, the biggest challenge has been communication. She does present with stereotypical autistic behaviors such as hand-flapping, self-injury (hers manifesting in the form of pulling her hair, biting her hand, or banging her head), and both vocal and tactile "stimming". However, these stereotypical behaviors present most frequently when she is frustrated from her inability to communicate her thoughts, wants, and needs. She has a fully functioning brain for all the thought processes we have, thinks in complete sentences (proven by use of dynamic assistive communication devices such as the Dynavox), and yet somehow the words get stuck between thought and speech.

In essence, Dr. A. Jean Ayres, Ph.D., OTR, may have described it better than any of us ever can: "a traffic jam of the senses in the brain." Just as if you were blind, the rest of your senses would become hypersensitive, in autism, you are not blind, but your brain doesn't know that. The senses become either hyper or hyposensitive, a varying combination of the two. The DSM-IV describes the criteria for an Autism Diagnosis here.

For Jadyne, she can hear and now process what she hears, but she can't speak even on the same level as her three year old brother, and she is 7 1/2, although she is now considered verbal, however once was considered non-verbal. This in and of itself is progress, but as in everything, in Jadyne's time. She craves visual stimulation, such as a disco ball lit up in a dark room. She can't feel touch as much, although much more than before (once upon a time she couldn't even feel pain at all), and so she craves tactile stimulation through means of water play, massage therapy, and joint compression. She has never turned down any food, thus I must assume, without her words, she cannot taste or smell. However, that little girl LOVES to eat.

Communication remains our focus. Jadyne is blasted with a speech therapy technique of "waiting" daily: unless she makes at least an approximation of the word, she cannot have what she wants. This may seem cruel to those that don't live this life, but it has been indeed the only thing that has forced her into progress. She can sign, she can approximate, and for some things she can talk, but an absence of communication has become unacceptable. Everyday she fights to get her words out, and everyday, she gets just a little more accessible.

For more information on the sensory aspect of autism, visit:

http://www.incrediblehorizons.com/sensory-integration.htm

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