My College Papers - New Tab Added

     I have added a new tab to the AOTA blog. It's called "My College Papers", and these are papers that I wrote for college about Teagan and his disabilities. There is a lot of good information in these, and I thought I would share them. Just click on the "My College Papers" for the link or click on the "My College Papers" tab at the top of the blog, then click on the titles to view the actual papers. Please respect my generosity, and do not copy these papers and submit them as your own. Thank you.

The Sound of Music

     The sound of music is something Teagan has been affected with, for as long as we can remember.  We first noticed it at age 2 when he was seemingly having seizure-like episodes every time he watched "The Wiggles".  Of course, for those parents who have been forced to watch hours upon hours of "The Wiggles" will know that their shows and movies are packed with musical numbers.  Which isn't a problem, we love them (or did, until they replaced Greg - that new guy sucks!).  But ever since, different types of music, or something in the music, affects Teagan.  Sad songs will make him so physically and emotionally upset that no amount of consoling will suffice.  Other songs, and this isn't restricted to specific types of music, it's a wide variety of music, so it must be something in the music, a tone, a beat, who knows!, that causes these seizure-like episodes. 
     Last year, I tried talking to him about these episodes, to see if he was aware that he is having them, or if he could explain how they feel, and he said, "The music is in my blood."  And that's probably exactly how it feels to him.  Because of his sensory issues, I feel this is probably the best description for how he feels when these things happen to him.  If someone feels like the music is in his or her blood, what else could they do but overstimulate and try to reset his or her system? 
     We have tried for nearly 7 years now to get these episodes diagnosed, but after EEG's, video EEG's, 24 hour video surveillance, MRI's, and various other tests, nobody can explain it.  I honestly believe it is a form of Epilepsy called Musicogenic Epilepsy.  My mother and I researched this, and it's the only thing we can come up with.  It only happens with music, and not all music, but most.
     You want to know what doctors have told us?  We explained that it happens a lot during movies and shows he likes, and always in the car when the radio is on.  They said, "Don't let him watch Thomas the Tank Engine" or "Don't let him listen to the radio."  Seriously?  Basically, they are asking us to take music away from Teagan, and he loves music.  We all do in this family, music is a big part of our lives.  We aren't musically inclined, but we do enjoy music with everything we do, and a wide range of musical genres, so taking music away from him is like taking away all of his toys because they might have small parts he can choke on.  Of course, he's too old for that, but seriously... take away music and movies he loves?  Not going to happen.  Unless of course, we get definitive proof that the music is causing him mental or physical pain or adversely affecting him, we will not take it away.  I really hate doctors.

Autism, Epilepsy Together Up Death Risk

This is a repost from the website listed below the article.

Individuals suffering from both autism and epilepsy are placed at a greater risk of dying than those who have autism alone, a new study finds.

Autism Speaks Autism Tissue Program (ATP) researchers, who examined data gathered from the California State Department of Developmental Services, found that people with both autism and epilepsy have an 800 percent higher mortality rate than those with autism alone.

Moreover, a study on the donated brain tissues showed that 39 percent of the autistic donors had experienced epilepsy, indicating that the estimated rate of epilepsy is relatively higher among the general autistic population, the researchers wrote in the Journal of Child Neurology.

According to the Autism Speaks, it is well established that epilepsy is a major medical disorder that is often co-morbid with autism in as many as 30 percent of children. As many as one in every 20 children diagnosed with autism by the age 3 may have experienced epilepsy or develop the condition later on in life.

As noted by the ATP more than a decade ago, sudden unexplained death in epilepsy (SUDEP) sufferers had been identified as a cause of death in autistic individuals. There is, however, relatively little known about the specific risk factors accounting for reported higher-than-expected rate of mortality in this population.

"This study highlights the importance of early identification of epilepsy in children with autism and of autism in children with epilepsy," said Roberto Tuchman, pediatric neurologist at Miami Children's Hospital and member of the Autism Speaks Scientific Advisory Council.

"The findings of this study should motivate the autism and epilepsy communities to increase their understanding of the risk factors and common mechanisms that can lead to epilepsy, autism or both epilepsy and autism. Understanding these early determinants will allow for the development of effective interventions and preventive measures and ultimately better outcomes for children with autism and epilepsy," he added.

"Sudden, unexpected or unexplained death in autism is often, but not always related to epilepsy and we need to use caution when interpreting these data," Clara Lajonchere, vice president of clinical programs at Autism Speaks, added in the news release.

"These findings are important for understanding risk factors that may contribute to early death in individuals with autism and further underscore the need for more accurate and accessible records on cause of death in this population."

SJM/PKH
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Autism - Take 1

     So, obviously new to blogging, but thought it might be a good idea to start putting some thoughts out there for others who may be suffering as our family does.  Obviously, from the title of this blog, we are a family affected by Autism, among other things... 
     I guess I should start from the beginning.  I never wanted children.  I had been a babysitter and nanny since the age of 15, and though I loved other people's children, I didn't want any of my own.  However, once I met my husband, that all seemed to change.  We got married, and 1 1/2 months after our wedding, we were conceiving.  Though I never wanted children, I could never imagine my life without our special little guy, Teagan.
     Teagan was born two weeks early because of complications during pregnancy.  Four months after, he was diagnosed with Infant Torticollis.  Infant Torticollis is defined as, "...prolonged tightening (contraction) of the neck muscles that causes the head to turn to one side."  http://www.ptworkingforyou.com/tort.html  After six months of physical therapy, all was well.  However... when at nearly two years of age, he still was not crawling, we knew something else was wrong.  He was also not speaking.  Eventually the crawling turned into running in a short period of time, but it took six months of speech therapy to go from saying three words, "mama", "dada" and "peas" for please, to speaking like a normally developed three year old. 
     During all this time, we were noticing something else going on with Teagan.  He absolutely loved The Wiggles.  But everytime he would watch one of their videos, something strange would happen, and it appeared he was listening to someone speak in his ear, while his eyes would roll up into his head.  Obviously, we had MRI's and other scans done, but nothing came of them.  To this day, we are still trying to get these diagnosed, but from the research I have done, I have come to the conclusion that these are a type of epileptic seizure induced by music.  There is such a thing called musicogenic epilepsy, but we have not been able to get them diagnosed.  Either way, when he has these episodes, they are always induced by music, which is worrisome, because when he is older and driving a car, it could pose life-threatening.
     Teagan was diagnosed with severe Attention-Deficit/Hyperactivity Disorder (ADHD) at the age of 3.  And believe me when I say severe... the doctor said it was the most severe case she had ever seen in a 3 year old.  Cue the energizer bunny.  On to age 4, when he was diagnosed with high-functioning Autism.  At this point in our lives, our only exposure to Autism was from the movie Rainman.  Obviously, my son is nothing like that man portrayed in the movie, but at the time, we were totally freaking out, wondering how we would be able to deal with this new diagnosis.  I have to say that we are very, very, VERY fortunate that Teagan is high-functioning.  I have met other families who were not so fortunate, and I cannot imagine not being able to hear those precious words, "I love you", spill from his sweet lips. 
     At the age of 5, Teagan was diagnosed with Oppositional-Defiant Disorder, Sensory Processing Disorder, and Central Auditory Processing Disorder.  For those who do not know what these are, I will briefly explain each.  Oppositional-Defiant Disorder (ODD) is "... an ongoing pattern of uncooperative, defiant, and hostile behavior toward authority figures that seriously interferes with the youngster’s day to day functioning". http://aacap.org/page.ww?name=Children+with+Oppositional+Defiant+Disorder&section=Facts+for+Families  Sensory Processing Disorder has many names; Sensory Integration Dysfunction, Sensory Integration Disorder, etc..., and it is defined as "...the way the nervous system receives messages from the senses and turns them into appropriate motor and behavioral responses". http://www.sinetwork.org/about-sensory-processing-disorder.html   By the way, this website has an awesome book available in libraries that really goes into detail about the day-to-day rituals children go through in order to avoid overstimulation from sensory issues.  Teagan is affected by sound, sight, and textures of clothing, food, etc.  Central Auditory Processing Disorder is "...an umbrella term for a variety of disorders that affect the way the brain processes auditory information. It is not a sensory (inner ear) hearing impairment; individuals with APD usually have normal peripheral hearing ability. However, they cannot process the information they hear in the same way as others do, which leads to difficulties in recognizing and interpreting sounds, especially the sounds composing speech". http://en.wikipedia.org/wiki/Auditory_processing_disorder
     Later on, he was also diagnosed with Separation Anxiety, which presents itself whenever we leave him at school.  He clings to us and gets visibly and physically upset, fearing we will not return for him, but we always have and always will.  He's had this since pre-k at the age of 3, and now at age 8, still has not outgrown it. 
     So, now that I've gotten all the history and diagnoses out of the way, I thought I'd explain why I started this blog.  It is one part raising awareness for Autism and the other diagnoses Teagan suffers from, one part sharing the daily struggles (or weekly, depending on when I have time to write) that we deal with, and one part the hilarity that is living with Autism.  Yes, you read that right.  There is great humor and entertainment when living with a child with Autism.  Teagan is just about the funniest child ever, and I hope you all enjoy the exploits I write about, as much as I enjoy living them... well, most of the time.  Don't forget that Autism is an ongoing battle and there are many, many struggles both inside and outside the home that we must face on a daily basis.  But, for the most part, it is enjoyable having a child like Teagan, and I wouldn't trade him for the world.