Friday, March 11, 2011

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.
  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
They can help walk you through the process, provide all necessary forms, and offer lots of support.

Tuesday, March 1, 2011

Wal-Mart....The Next Time....

Wal-Mart….The Next Time…. see a child laying on the ground kicking his/her feet…

Maybe the parents aren’t complete failures in discipline.

Maybe It’s Autism. see a child with pull-ups peeking through at least the age of six….

Maybe his parents aren't complete failures....

Maybe It's Autism. pause for just a bit longer as a mother walks her child....

Maybe she's not wasting your day..

Maybe It's Autism.

Enjoy the Luxury of a Child That...

...responds to words.

...pees on the potty on command.

...takes your hand.

We [the drafted warriors of this war--parents with a child(ren) with autism] don't know those luxuries.

We know...........



...beyond the bounds of words.

...beyond the bounds of conformity.

...beyond the bounds of time.

Autism:  1:110 Children Affected.


Make a Difference Today?

Sunday, February 20, 2011

"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..


Friday, February 18, 2011

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

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 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

Wednesday, February 16, 2011

Team Jadyne Video

Please repost for us. Thank you!


GREAT GREAT GREAT Awareness PSA Videoby National Autism Association
...and THIS is why we walk!!!
Please share this!


Tuesday, February 15, 2011

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 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.


“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.”


Together we can do this!

Email Us at


Sunday, February 13, 2011

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.

Saturday, February 12, 2011

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.


Full Screen Suggested to View Annotations
More details on YouTube viewing


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.

Sunday, January 16, 2011

Our Journey with Epilepsy

One of Jadyne's 24hr+ EEGs over the years. She's a trooper.

I know when I first heard the doctors tell me my daughter had epilepsy I thought of a child flailing uncontrollably possibly dying from swallowing her tongue. I'm not quite sure where these myths started, but they simply aren't true.

Jadyne's first seizure was at seven months old. There are many types of seizures, and her first one was an absence seizure. During an absence seizure, the child just stares right through you. They are unresponsive to any stimulation. It is quite scary. I rushed her to the ER, but the ER told me she just had a night terror. A night terror? She's seven months old? What has she possibly experienced in her life so frightening it would even manifest itself as a night terror. From having two other children already, I knew night terrors were more of a toddler stage occurrence. Therefore, I followed-up with her pediatrician. He had performed a neurology residency during his education and knew immediately from the symptoms we described this was indeed an absence seizure. No one in my family had seizures. This frightened me. Shouldn't we do some type of work-up? His answer was that everyone is entitled to one seizure in their lifetime, that it was probably just stimulated by lights or some other type of over-stimulation, and if she had another, then we'd do a work-up. This didn't set right with me, considering she was getting ready for bed when the seizure occurred. The lights were dimmed. The house was quiet. Still I was too new into this lifestyle of a parent of a disabled child to realize I could question and even fight the doctors when needed for her care.

What became the focus soon after as Jadyne turned a year old is that she has missed so many milestones. The formal testing began, and all the tests showed "something" was wrong, but nothing showed exactly what. Therefore, therapy began when she was 14 mos old. Jadyne did all kinds of "quirky" things. She would flap her fingers (later to be discovered to be a stereotypical autistic behavior of atypical handflapping), bang her head, pull hear hair, and more (again all stereotypical autistic behaviors). I had noticed she began to flutter her eyes and bob her head a bit once in awhile, but I just thought this was another "quirk" of hers. Luckily, it was one of her therapists, when she was 2 1/2 that said, "You know, I work with another little boy who has seizures and his seizures look very similar to that eye fluttering she's doing."

Soon after we were at Children's Hospital of Pittsburgh; Jadyne was admitted. They kept her for three days and ran every test possible within those three days. The developmental team and neurology team worked together. The conclusion was Jadyne was having so many seizures in a day that it was impossible to count. The possibility lied that her developmental issues were related to the seizures, and the developmental team would continue to rule out possible diagnoses as time went on. The chromosome for autism and epilepsy are closely related, so a single depletion could cause both in theory. As we left, it was confirmed Jadyne had a Generalized Seizure Disorder, also known as Epilepsy. The doctor's put her on Topamax, but she didn't get better, she got worse. For a year the doctor's upped the dosage until finally giving up that this medication, although effective for many and carrying very low side effects, just was not going to be effective for Jadyne.

Currently Jadyne is diagnosed with Generalized Nonconvulsive Epilepsy. We do suspect due to the progression of the manifestation of her seizures and the increase in frequency of her seizures over the years that she will eventually have Generalized Convulsive Epilepsy, as she has already begun to present with some of the criteria for that diagnosis. Fortunately, we were able to find a wonderful pediatric neurologist, Maggi Jaynes, out of WVU Pediatric Neurology. She took Jadyne off the Topamax, knowing immediately that drug would never have proven effective for Jadyne's type of epilepsy and put her on what has proven to be a miracle drug for her, Lamictal. You'll notice if you click that link, the generic form is lamotrogine, which of course, Jadyne was first put on. It worked for about a year. However, she grew a tolerance. The drug must be titrated very slowly due to a very rare side effect. Thus, once the generic form no longer worked, we had to completely retitrate her to the brand necessary form. It takes approximately six months to get to a workable dose. However, Jadyne always showed great results much sooner. She's tolerated the drug very well. Approximately every 6-9 months she'll begin to have seizure breakthroughs, and we'll up the dosage. However, we're still far below the maximum dosage per kilo. I can't say enough about this drug. Thank you, GlaxoSmithKline.

Jadyne still has seizures. She's unaware that she has them. Most are only a few seconds long, just an eye flutter and a head bop. As her tolerance to the medication ensues, she begins to have drop attacks. These have caused injuries to her face and body, and they are what concern us. She will most likely never be seizure free. However, as long as we can keep the seizures to a minimum through miracle medications like Lamictal, she can lead a normal life. Unfortunately not enough of the public is trained in epilepsy that works with children. The term epilepsy is often frightening to many. Jadyne has been needlessly pulled out of class many many times over a few second seizure. There is not a reason a child with epilepsy can't lead a normal life like any other kid.

The term Lennox-Gastaut Syndrome has been thrown around over the years with Jadyne's specialists. However, it can only be diagnosed by a specific spike and wave pattern on an EEG, and it isn't worth taking her off her medication to see if the pattern exists because treatment for that disorder is the same as the treatment regiment she is already using. Regardless of whether she has that disorder or not, her seizures have progressed in manifestation and frequency over the years. This isn't over yet. It isn't unreasonable to believe eventually Jadyne's seizures will manifest into Grand Mal Seizures. In fact there is no difference on an EEG from a Grand Mal Seizure to any other of the Generalized Seizures she has. The only difference is the manifestation in what the body does during the seizure. Our hope is that through the medication and advancement of research and improvement of medications, we can continue to prevent these seizures from occurring for her. So far, we have been very fortunate to find an amazing specialist and a miracle medication, and Jadyne leads a life like any other kid without epilepsy. =)

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.

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