Things that make me thankful.

Casey

This new school year has been far from boring. The anxiety is gone and my rambunctious boys are adjusting well. We have had a few bumps in the road but so far, I am very pleased. Last year was a bit chaotic and I did not have much to be sincerely thankful for. However, this year has been a blessing. I think it is important to acknowledge the good with the bad.

Friday was a great example of the life and day in the Dean home. All the kids went off to school and the house was calm. Around 1 P.M. I recieved a phone call from the ESE Vice Principle at H.M.S. She had good news. Our oldest son Casey had obtained a 103 on a math test. This was great news! Casey got on the phone and expressed how excited he was for his wonderful accomplishment. You see, Casey excels in all his gifted classes but math. I honestly think he has never had a "real" math teacher before. We realized there may be a problem with his math teacher a few months ago and expressed our concerns with the school administration. In years past, many times,  the administration would have ignored our concerns but not this school. They looked into the situation and took it upon themselves to switch Casey’s math teacher. The new teacher had much more experience and history at the school. Sure enough, the first week in the new classroom Casey received his first A+ in math for the 2009-2010 school year. Not only is he performing better but Casey has informed us that his new teacher makes him feel “confident” in himself.

Words can’t express how thankful I am to the staff/administration at Casey’s middle school. They have gone above and beyond my expectations. The School experience has such a huge impact on our children. Being a mom with three children with special needs, I deal with the school system constantly. Many times, I am left feeling unheard and defeated. However, when a school steps up and actually works hard for your child, well, it’s a down right amazing! I say “bravo” to the wonderful teachers and staff who actually give a dam!

Evan

Now, later that day, I received another phone call from the elementary school my other children attend. My son Evan had a melt down in the lunchroom. I laughed a little thinking how a day going so well is derailed by another phone call. Such is the life of a mom. Our kids keep us on our toes. No time to become complacent. I am certain these won’t be the last phone calls I receive this year. Nevertheless, for today, I am feeling very thankful.

How Stigma's Can Kill - Jett Travolta

Travolta’s sons had Autism & Seizures. His story hits home to me... Because it seems he received very little emotional support/trust. Whether it's your church, school or a family member, no one should deny or be ashamed of a child's sickness. Travolta's son may have never received proper medical care through-out his life because of misconceptions of his illness via Scientology. My heart goes out to the Travolta's

The Good, The Bad and The Ugly

The children have started school and so far the first two weeks have went well. Surprisingly, Evan ,who I wrote about in my last post is thriving at his new school. The teacher has him doing grade level work and she is very impressed with his productivity. Maxwell loves kindergarten. Starting school makes him feel like a big boy now! Casey seems to be adjusting well to middle school. I am sure this would not be possible without the impressive measures his gifted 6Thu grade teacher has taken. So far, we feel very blessed with the start of the new school year.

I always remind my readers why I started this blog. For me, it has become a great way to vent my frustrations and share my joys raising my special children. Many who write blogs know how therapeutic they are. With that said, I need to vent my latest frustrations pertaining to my children's disabilities and the lack of support I get from a close family member. I am certain I am not the only mother of disabled children who has experienced this and I would love to hear from you.

I have a sibling who has been saying horrid things about me and my children for years. My goal is to not let it get to me. To be honest, this person has been diagnosed bi-polar in the past, so I try to look at the source. I am always telling myself, to just let it go. My belief is that people who are mentally ill, can't truly make good judgements. Their mind is cloudy.

You never expect a loved one to turn on you when you need them the most. You would think that no matter what, blood is thicker then water. But I have learned this is not true. Through my darkest hours I have found such disappointment with my sibling. My oldest child was diagnosed with Mitochondrial Disease after a muscles biopsy was preformed. This was a very serious procedure. He, along with his brothers have been seen by three neurologists. One of the neurologists even works for the Muscular Dystrophy Association and all see the same disease. This year, Casey was approved for a power-chair so he doesn't have to walk long distances; the chair will help him conserve energy. I was told that my youngest child will never be able to play sports because his joints are too weak and loose. All my children have brand new bikes but they have never taken to riding them. Their muscle weakness and lack of coordination makes it almost impossible. Casey can tie his shoes but when they come undone, he tends to walk on the laces which destroys them. To prevent him from tripping and destroying his shoes we started using slip-ons. Kids with Asperger Syndrome have poor self awareness and are sloppy by nature. Our goal is to adapt to new situations instead of pointing out flaws in our kids.

The most important thing is that our children feel accepted and loved. I embrace their wonderful qualities and try not to point out their imperfections. I am fortunate to have children with very high IQ's. They have never been held back and are advancing well in school. Education is a priority in our home.

As much as I would love to see them play sports and stay out side all day, my children will never be those children. And if anyone would love to see an athlete in the family it would be me. I was All-State in track. I also played basketball in high school. But the disease my children have prevents them from participating in sports. I once dreamed of going to my kids games but I had to build new dreams. Dreams that are more realistic. The sad thing here is, my sibling thinks my children are not sick. That I have made them sick in my mind and all the doctors are liars.

Yes, that is correct, I made my children sick. All this is my fault and I am a bad mother. What mother doesn't let their children ride bikes or tie their shoes? All the doctors are wrong, they just want my money, even the MDA doctors. I suppose my kids don't have seizures either. And

the medication's they take are for nothing. Casey's need to use a chair is just a lie I created in my head. This is what I have been hearing for years. Each year my children get sicker. Each year we prepare for the worst. I can't tell you how this breaks my heart. Support needs to come from family. I know God is looking down and shaking his head.

Yes, I must consider the source. This is what I tell myself every time I hear about the poison coming out of certain person's mouth. This is a person who a few years ago almost killed their child while driving drunk at 4 A.M. in the morning. The parent had taken the child out with them while parting with friends. The vehicle later flipped and the child was ejected through the wind shield but angels protected him. His only injuries were bruises and scratches. The social worker spoke to me. She said the police officer was appalled because the driver didn't remember they had a child in the car. He was found later lying under a tree crying. Charges are just now being served. Then there have been the many events that led to Children And Family services being called for possible abuse/neglect charges. These same children who need therapy from abuses I will not speak of in this post, yet none is ever received because of fear of what the children might say. Yes, my children may be sheltered but I embrace my children's innocence. Children shouldn't be made to grow up too fast. Yes, I must consider the source.

With all this, I can honestly say I love this family member and would never wish harm on them. But I do not think they feel the same about me or my children. Some people on earth have so much hate in their hearts that they bring about the worst karma. I believe when you live a life of hatred and darkness you bring on a world of bad to your life. This makes me very sad because I believe this is happening to my sibling. And they don't even realize it. How could you wish ill-will on others and not expect that karma to come back on you?

Enough of this rant. The therapy of writing is truly amazing. I am sorry this post is so negative and sad. But sometimes life is not a bed of flowers. Remember, this blog is about my life and my sick children . I write about the good, the bad and the ugly. Not only is it therapeutic for me but I hope it helps other families not feel so alone on their own life journey.

Summer is almost over - Back To School Soon!

Yet another summer is leaving us! Soon children will try to sleep in as long as possible before the bus arrives to take them to school. My kids never sleep in late during the summer or the weekends. They are early risers, except on school days! I am now preparing myself for the morning battles of 'Waking the kids up"!

This new school year will be very interesting. Max starts kindergarten. Evan is going into the 4Th grade and Casey is entering middle school. For a parent of three children with disabilities I am preparing for the journey I like to call, "The Public School System". So many mazes and turns, oh my! Yes, I know I sound a bit sarcastic but to be honest I am a bit jaded as of late. I think many parents on the same path as mine know what I am talking about. Being an advocate for your children is not easy. You sometimes have to deal with people that really don't have the background or knowledge to understand or educate your child. You see, the "system" is not perfect, far from it.

For example: my son Evan was in a mild mixed grade ESE class. At first,I was impressed with his teacher but first impressions can be deceiving. Later in the year I noticed that even though his report card showed passing grades, his teacher said he wasn't doing 3rd grade reading. He was only capable of 2Nd grade work, so in theory, he would not pass the Fcat. This would cause him to be held back. Off to our IEP meeting I went!

Now, most parents would like to think that the ESE teacher has specialized training. We hope they are on top of their game when it comes to our children's education. I mean, that is the impression that they give you at these big IEP meetings right? Wrong! This is where I became truly jaded with the public school system. But first let me share with you a bit about my son.

Evan is one of those kids that could care less about his grades. To him, the sooner he can finish an assignment the better. And he will do what ever it takes to achieve that goal. This includes pretending that he can't read, filling in answers with random words that make no sense and just not reading the assignment. He is a true manipulator, which if very common in gifted kids. Not all smart kids want to be productive in school. My son is what you would call, a non-achiever! My husband was also one of those kids. The irony of it all, my husband is now a Chair/Course Director at a local University.

So off we go to the IEP meeting which the teacher decides to keep real small. Only the teacher, Occupational Therapist and myself attended. Which in Heine site I should have refused. Hey, I am still learning. Next time I will be smarter! Anyway, so the teacher precedes to tell me Evan will most likely not pass 3rd grade because he has a reading comprehension problem. I am informed that he has only been exposed to 2ND grade work. All tests she has given him show there is no way he will pass the Fcat. Now, I was a little blown away by this. Because my son is a prolific reader at home. He, along with his older brother love books. They have books falling from the rafters in their room and some are college level books. My son begs to go to book fairs, for the love of god! So, you see, I was a bit surprised by her statements.

I told her she was wrong. And of course she rolled her eyes not once but twice at me as she informed me tests don't lie. I adamantly told her, my son can read and tests do lie if a child is just bubbling in answers to complete the work. She again, told me no, he had a reading comprehension problem. I am laughing now thinking about this latest episode I experienced. You see, Evan had already taken the FCat days before my meeting with his lovely "experienced ESE teacher" so in no way could I help him prepare for the doom she now had bestowed on me. My son was going to repeat the 3rd grade. She pretty much guaranteed it!

In my heart of hearts,I knew that teacher was wrong. The one thing people in the education system need to realize is good parents know their children. And it is important to listen to what we have to say. On the last day of school my son came home and informed me he recieved a 4 on the Reading portion of the FCat. He was going onto the 4Th grade. My son, who wasn't even exposed to 3rd grade reading assignments all year because his teacher was clueless. He received a 4 out of the highest score of 5. I even called the school to make sure he was telling me the truth. HM, I wonder what he would have recieved had she actually taught him?

The teacher never contacted me. And thankfully he will get a fresh start at a new school this year. After this last episode my husband and I have come to the realization that we need to have his IQ properly tested. He obviously out smarted his own teacher. I don't want my child to be a non-achiever when he has so much potential!

This is just one of the many stories I could tell about my journey in the "Public School System". Now don't get me wrong, there are many good teachers out there. We have had good experiences too. But I can't help but think, here comes yet another year of advocating for my kids. Another year of dealing with the flawed education system. My goal is to stay positive and not to take things personally. I think many parents of kids with disabilities have these same anxieties. So just realize that as you wake your lovely children up for the first day of school, parents across the country are doing the same thing. They have the same struggles and anxieties. When ever you get down just think, this too shall pass.

My Aspie Son, The Creative Writer

Casey Dean

My ten year old son Casey just graduated from 5Th grade. He faced many challenges these past six years. Challenges such as adjusting to three different schools, to being diagnosed with Mitochondrial Disease, then Complex Partial Epilepsy, to dealing with medication's side affects and lastly, living in a world with high functioning autism. The last two years Casey has been in the public school gifted program. With all his health and emotional disabilities Casey mainstreamed and he learned to adapt. In my eyes this has been his greatest accomplishment. I admire the children that against all odds, prove the system wrong. They do the impossible.

As I watched Casey's graduating class receive their many awards. Casey sat quietly most of the time. He was not the perfect student you see. He did not have perfect report cards or behaviour. His talents were often overlooked. Being in a gifted class with the countries finest minds must be very hard thing to compete against. A child like Casey has a hard enough time even making it through the school day, let alone finishing his homework. No, Casey just sat there watching all the "other" kids receive many "pats on the back" for their accomplishments.

As I sat there, I started to feel a little sorry for my son. Many think autistic kids don't have feelings but this is not the case for Casey. He has more emotion then most NT's I know. I thought to myself, how could a child like Casey not be acknowledged for his achievements? There seems to be a great injustice here. The system is all wrong. How could this be? Because to me, he accomplished much more then words can express. He did want many thought impossible. I know the private schools never thought Casey would mainstream into regular classes, let alone the gifted program.

My son did receive a few awards these past two years in public school, even though they weren't acknowledge on graduation day. He won the young authors award in 4Th grade and also received a state award for one of the best writing responses on the FCat in the state of Florida. To me, this was a great achievement knowing he was also one of the youngest in his class. You see, Casey started school a year early. So technically he shouldn't have taken that test until the following year.

The school year is over but I feel I want to do something special in honor of my son's great achievements these past six years. I am going to post a few chapters of a rough draft story I found in Casey's back pack. My ten year old son, is a gifted writer, with an incredible imagination. I love him very much and in my eyes he is a miracle; a true success story.

Casey Dean Author

Dragon Quest

Chapter 3 : The Quest For The Volcano

John started trodding through the murky swamp with his assistant Jack. They were trying to find their way to the volcano. "I think I stepped in something!" John Complained. "That is bog water." Said Jack. They splashed and they strode through the bog water. There was dead silence through out the rest of the trip. The crows were crowing and the bubbles were plodding up. John was breathing slowly as the bog was making him breath hard. "Wait a minute..." John said cautiously. The bubbles were coming up much more fast then before. "This is not good ; Run! " John yelled at Jack. It was a bog beast. The monster started shooting out slime at John. He could have knight stew for supper. A man came out of a house on the board walk when he heard the roar of the beast. "Who are you?" Jack asked. "I an David of the Murght Kingdom." David pronounced. "I would like to join your party." David said again. John was worried about the bog best, not David. John took his sword and sliced the beast. The monster grew another arm out of the swamp and said; "I'll deal with you later, friend!" Then he sunk into the abyss, talking and whimpering to himself. John wiped the swamp sludge off his blade and continued on. " So, David, why did you join us?" John asked like a child asking for ice cream. "Well, it's pretty simple, I have Been studying the history of dragons, the language of dragons, and dragon lore from the legendary dragon king himself! I always was fond of dragons and would like to see one up close." David told John. "Well today is your lucky day, we are entering the Forsenithan Forest!" Jack announced. The Forsenithan Forest was a strange and mysterious forest where the Elves lived, a smart species with long ears. They have always hated dragons and their kingdom. The forest was a quiet place, it was unusual. David's horses were all they needed to hear through the quietness of the forest. "Wow, this place is pretty neat, maybe we'll run into the dragon of the forest!" Jack stated. "The elves might hear us, so be quiet!" John cried. "Hey look, a note! " David spotted a muddy note under his white as snow horse. "It says" " This note is by the dragon researcher, Norsend. The elves are nearby and I don't have much time, the wizard Trakvag came by and he told me that he is heading to the north, which is where a great mountain resides, inside should be whe----." The rest is smudged with mud and I cant read it. So we should head north." David said, The clopping of the horse continued until they heard voices. " Elves!" John alarmed. They looked in fear as the elves threatened them with arrows. "Look, it's the cage with the Forest Dragon!" Jack spotted a cage. John swung his sword at the elves and scared most of them off. When they freed the dragon, the dragon said: "Climb on my back, humans!" And he flew into the air, flaming a vail of fire so the elves's griffons could not chase them.

Chapter 4: Confrontation

"So, you humans are off to free my brothers?" The Forest Dragon asked willingly. "yes, we have come from the Dragon Kingdom to free your brothers. Man, this really is cool riding on a green dragon's back." John said trying not to look down. "Well there are many dragons, not just green." Forest Dragon announced. The three looked down and said: "We have to jump!" Then John, David and Jack jumped off the dragon as it said: " Good luck, humans!" John entered an abandoned building. It was dark. John and David looked at each other with troubled looks. There were bats and bugs flying in the air and candles were lit. "This place is creepy, stay close..." David said cautiously. Foot steps echoed through the halls. "Ohhh." jack whimpered. "Wuss..." John muttered. Then they heard a voice say: "Stop, you are an unworthy one to cross the volcano, to get to my master, you must get through me! You fools shall tremble at my blade, your blood will spill, and I shall be victorious, the dragons are ours, and there is nothing you can do to stop us, MORTALS!" The Dark Prince yelled as he charged at John with the evil Darkblade. Then the sword fight began. he slashed and swung his blade and the prince only got stronger, you could see his eyes gleaming red though his helmet visor. John swung his sword up; that didn't work. he swung his sword down; that still didn't work. He swung his sword left and right; nope still didn't work. he had to fake it. he swung his sword up but swung it down instead, hitting the prince in the leg. The prince let out an unearthly scream, letting out a spirit that was dragged down into a fire in the ground that surely was not heaven. After that there was complete silence. John went into the volcano room and prepared for the final fight, the one that would change his life...

Chapter 5: The End of The End

The wizard Trakvag was standing at a catwalk at the other side of the room. "Well, well, well, if it isn't John the Knight." Trakvag said with a ghastly grin. "Your days are over, Trakvag!" John said. "Not if i kill you first!" Trakvag cried. Then Trakvag started launching fire balls at John who tried his best to dodge them. Fire balls as light as the sun were flying every where. Jack hit a lever though, that opened the dragon's cages. The dragons flew in the air and breathed fire which formed a fireball that fell on Trakvag. As Trakvag was burning he was yelling: Nooo! You must not win, Volkon is mine! " When Trakvag was completely disintegrated; the dragons returned to Volkon. Peace and order returned to the kingdom...for now.

My Boys Are Growing Up!

Dean Boys 2009

I thought I would update everyone following my blog on the latest news regarding my family. It seems the Mitochondrial Disease is starting to really show it's ugly face. Sometimes I almost forget my boys are even sick. They go months with normal growth and no medical issues. But in the past few months we have been seeing doctors more then ever. I am trying to be better prepared for the future. When will the money run out? How can we get assistance when needed? Do we even qualify? Will the boys become progressively worse? Maxwell, our youngest child, who we thought was the non-mito kid in the family is now showing rapid health decline with emotional and physical weakness. He just started seeing an Occupational Therapist and suffers from epilepsy. Evan is starting to have gastric issues and has started treatment for irritation in his stomach. Casey, the oldest child, has epilepsy and extreme muscle weakness/fatigue. All three have Autistic Spectrum Traits .

With all this on our minds we are a happy family. Our kids are wonderful! My husband and I love each other deeply. But we have this cloud that seems to follow us. People always say to me; " How do you stay so up-beat all the time? I don't know how you do it! Most people wouldn't be able to handle what your going through." I am always short with a response. I don't know how to answer them. To be honest, this is my life and I have accepted it. I know it sounds hard to believe but besides the children's illnesseses I feel very lucky. I have awesome children. A loving husband who is a good dad. What more could a mom ask for? No ones life is perfect. As my grandma use to say, ' Everyone has a cross to carry, just some are heavier then others." As I have grown up these words have always stuck with me, subconsciously I suppose.

But I do have fears. Mostly about the things I have no control over. My husband has a very good secure job. Without the costs for health care etc. we would be doing well finacially. But slowly we are starting to struggle. Medical bills are starting to take their tole on our house hold imcome and I fear it will continue to get worse. We don't qaulify for any assistance. My husband makes too much money. They dont take into account your medical bills, gross income is all that is looked at. I read this article today that really touched me. Their story is more severe but it reminds me of where we could be headed. I will post the article below. This is what I fear most of all!

Rare genetic disorder attacking mother, three sons

***
Family afflicted physically, financially

By Peggy O'Farrell The Cincinnati Enquirer

As his wife and two children have battled a life-threatening genetic illness, Rich Lowery has had plenty to worry about besides money. Mitochondrial disease is a rare genetic disease. One in 4,000 people are diagnosed with some form of it. The disease attacks the body's ability to convert food into energy. Ultimately, heart, brain or muscular systems can fail. For Kim Lowery and two sons, Tanner, 7, and Thomas, 3, the disease has been severe. Now, the Lowerys have discovered their oldest son, Tripp, 11, has it too.

With medical bills constantly pouring in, their debt already is huge. Mr. Lowery has a good job — he's an engineer at Fluor Daniel's Fernald site — and decent health insurance. But insurance doesn't cover many of the costs for treatment or the nutritional supplements Kim Lowery and the couple's three sons need. For the Lowerys, those costs add up to about $3,000 a month in medical expenses that insurance doesn't cover.

Friends and neighbors have helped out over the years through a variety of fund-raisers, and an account has been set up at Firstar Bank to help the family. But Mr. Lowery is looking for a second job to pay at least part of those bills. “I basically need to have a second income just to keep our heads above water,” he says.

Better off jobless

As hard as he works, some days Mr. Lowery can't help but think he might be better off if he quit his job, so his children, at least, can qualify for state and federal health benefits. He has applied for assistance through the state, and is awaiting word on whether the family will qualify for a medical waiver for help. But while he's working, he earns too much to qualify for federal assistance. His health insurance provider has set up a case manager for the family and authorized payment for services outside what most plans would cover.
But there's still a 20 percent co-payment to be met, expenses that aren't covered by health insurance and routine bills such as the mortgage, utilities and groceries.
Mr. Lowery estimates the family's medical debt at between $50,000 and $60,000, and it will continue to grow as his wife and children grow sicker. “I'm sure I would have lost my house a long time ago if it weren't for the good will of others,” he says.

Home is hospital

The disease is costing the family physically and emotionally too: Tanner has suffered several stroke-like episodes, and he can't go to school because of the disease. Both boys are routinely on oxygen and suffer seizures regularly. Mrs. Lowery, Tanner and Thomas require full-time nursing, and some days, more than one nurse is needed at the house. The Lowerys' home looks and sounds like a hospital. On days Tanner and Thomas are up and around, they're on oxygen lines. Monitors that indicate their breathing and heart rates beep routinely. When one of them stops breathing or suffers a seizure, the monitors beep louder. “Some days it's like an ICU in the living room,” says Georgina Schmits, one of the home health nurses who works with the family. Recently, the Lowerys' oldest son, Tripp, 11, began showing symptoms even though the family had originally thought he was free of the disease. “That was the final blow, along with our youngest son having his first seizure last November,” Mrs. Lowery says. “He had been pretty healthy up until then.” Dealing with disease Mrs. Lowery and Tanner were diagnosed with the disease shortly after Tanner's birth in 1994. Thomas was diagnosed with the disease when he was born. The outlook for Tanner is not good. For the others, the outcome is hard to predict because each family member's response will vary depending on how the disease progresses and which internal systems are affected. They can count on continuing to become weaker over time.
The supplements the Lowerys take — B vitamins, vitamins C and E and several amino acids — help make up for their bodies' inability to make energy. Mrs. Lowery recently returned from a trip to San Diego. She and her children are participating in research through the University of California. Scientists are mapping their DNA to try to find more effective treatments, and one day, a cure, for mitochondrial disease. “There's always a question: Is this research going to be in time for us?” Mrs. Lowery says. “But we hope that even if it's not in time for our family that it will be in time for other families.”

Battle tests faith

For the Lowerys, their battle with mitochondrial disease has been a test of faith, both spiritually and in their marriage. Mrs. Lowery says her husband is a saint, working non-stop to support a family he could lose at any moment to an incurable disease. “He comes home every day and takes care of four sick people, faced with the knowledge he might lose all of us,” she says. Mr. Lowery says he took a vow to take care of his family for better or worse, and he's living up to it. “I've said to my wife, this life is not about me any more. I'll surrender myself to work and service to my family, because it's an honor to serve my family like this.”

Counseling, Multiple Exceptionality, and Psychological Issues

Great article by Edward R. Amend, Psy.D. that all parents of Asperger children should read.

As a licensed clinical psychologist specializing in giftedness, I read my colleague Jim Webb's paper with much interest. I, too, am concerned about the too frequent mis-diagnosis and over-diagnosis of gifted and talented youth.

In addition to the clinical syndromes outlined by Dr. Webb, Asperger's Disorder is another that is becoming commonly mis-diagnosed in gifted youth. Although there can be similarities between a gifted child and a child with Asperger's Disorder, there are very clear differences. Thorough evaluation is necessary to distinguish gifted children's sometimes unusual and sometimes unique social interactions from Asperger's Disorder. In the same way, thorough evaluation is also necessary to distinguish Attention-Deficit/ Hyperactivity Disorder (ADHD) from behavioral problems and inattention that result from other causes such as anxiety, traumatic experiences (e.g., abuse), inappropriate curriculum, or even poor parenting.

A "qualitative impairment" in social interaction is one of the two main characteristics of Asperger's Disorder. Although the DSM-IV gives fairly explicit criteria for this type of social impairment, which does sometimes appear in gifted kids, the highly gifted child's atypical social interactions or unusual modes of commenting and joking may often be misinterpreted as being characteristics of Asperger's Disorder. However, a closer look at the criteria shows differences between Asperger's Disorder and behaviors associated with gifted children. For example, a lack of social or emotional reciprocity is characteristic of Asperger's Disorder while gifted children most often show a tremendous concern for others. They may not always know how to express it appropriately, but the concern is there.

The second major DSM-IV diagnostic component of Asperger's Disorder includes restricted interests characterized by an "encompassing preoccupation with one or more...interest(s) that is abnormal either in intensity or focus." Professionals knowledgeable about Asperger's Disorder describe an intense fascination with a special interest that can come and go, but which will dominate the child's free time and conversation. Children with Asperger's Disorder may also show an uneven profile of abilities with remarkable long-term memory, exceptional concentration when engaged in their special interest, and an original method of problem solving. In contrast, they may also show motor clumsiness, and a lack of motivation and attention for activities that would engage age-peers. Social withdrawal, teasing by peers, and difficulties relating to others in an age- appropriate manner are other markers for Asperger's Disorder.

All of the above characteristics are also commonly seen in gifted children and can easily be mistaken as Asperger's Disorder by someone not familiar with the asynchronous development and special needs of gifted youth. The unusual behaviors of many gifted children do strike many who are not familiar with gifted characteristics as a "qualitative impairment" in social interactions. Although the gifted child's interactions may technically show a "qualitative impairment," it is certainly of a different nature and likely has different causes (e.g., thoughts or worries by a gifted child about interacting).

Someone knowledgeable about giftedness could see these differences more readily than those who are not familiar. What I frequently see in practice is that when gifted youth are given the opportunity to interact with true "intellectual peers" in a particular area, their interactions are not only unimpaired, but also are often typical. In a child with Asperger's Disorder, one is not likely to see reciprocal interaction or discussion about a topic even if both children have an interest in the same topic. This is in marked contrast to gifted youngsters who will engage in extremely intense and also reciprocal conversations if both of them share the interest in, say, Pokemon or Harry Potter.

Differential diagnosing is an essential part of our work as health professionals, and it is easy to see how mis-diagnoses can be made. If professionals are unaware how characteristics of gifted children may appear similar to clinical syndromes, differentiation of diagnosis and treatment cannot occur, and many gifted children will continue to be mis-labeled and wrongly stigmatized. As a result, proper intervention cannot be implemented. For example, instruction for a bright but inattentive and disinterested student who is not being challenged in the classroom is very different from treatment or classroom approaches needed for an inattentive child with ADHD. Likewise, children with Asperger's Disorder often require much more intensive treatment and different classroom management, while a gifted child may benefit from interventions as simple as the opportunity to interact with appropriate peers.

I encourage your organization to help educate health professionals about the characteristics and social/emotional needs of gifted youth.

Sincerely,

Edward R. Amend, Psy.D.

Amend Psychological Services

Frances Whitman Building1025

Dove Run RoadLexington, KY 40502

15 Yr Old Aspie Talks About Autism

I am a 15 year old person with Asperger’s Syndrome, a form of autism. For Autism Awareness Day, I thought I would write a piece about my life with this condition, both personally and around others.Early on in my life, I exhibited a lot of weird quirks. In some cases it was a strange obsession: when I was in third grade, I was completely obsessed with the RMS Titanic, and while I never collected any objects pertaining to the interest, I did constantly write, draw, and talk about it. Before that, it was helicopters, fans, speedometers, and even my hands. I also remember absolutely LOVING the song Carmen, a classical piece by Georges Bizet for an opera of the same name - I remember going crazy and running in circles after getting up at 2 in the morning to play it (on a side note, I still love that song). While my hard-core obsessions stopped around the age of 9, I still tend to get obsessed over certain things that dominate my time completely…that of course being gaming and programming (I programmed my own server on the game Neverwinter Nights over a period of two years, before Vista on my new computer messed it up).

My social skills, as would be expected, have always been sub par. I never exhibited some of the symptoms that would ostracize me further from my peers (e.g coming up to people and rattling off random facts about an interest, or refusing to make any sort of eye contact). However, my generally detached demeanor, intelligent manner of speaking and thinking, and difficulty in fully integrating with their groups and mannerisms have made it difficult for me regardless. I have been able to develop very few truly appreciative, caring friends over the years because people judge me to be a socially retarded, geeky, weird person who doesn’t deserve to be treated with any sort of decency or kindness. Basically, my external quirks, demeanor, and strangeness frequently drive away many people before they get to know me.

At home….life is generally interesting, to say the least. Some of it is just general weirdness in my family, but some of it does indeed stem from my autism. My intense interests in my earlier years and frequent use of rather loud echolalia in imitating things I’ve heard in video games or on TV proved to be rather stressful to my parents, my mom in particular. (my sister did this too hehe) I am in direct contrast with my hyperactive, crazy, social butterfly of a sister. Interacting with her can be pretty interesting, regardless if we are fighting or getting along. My lack of friends and almost fear-like response to going outside and playing with others is a major reason I stay inside constantly, much to the chagrin of my parents. While a lot of my quirks have died out, some things, such as a constant want to discuss subjects people rarely know about, frequent anger at lack of understanding on my family’s end, and aversion to family events and the like (among other things) tend to produce tension among me and my mom and sister.

However, as a result of my autism, I tend to be happy with the way I’m made - my zeal for learning, my intelligence, my unique characteristics and personality, and an ability to pick up anything and learn it instantly is frequently attributed to Aspergers - I can’t even begin to imagine what kind of person I’d be without it. Many people have also seen it, and have made many attempts over the years to give me the best opportunity to succeed in life. But it also has it’s darker side. I have a very low self esteem and a lot of hate and anger towards both my peers, who I see as judgmental, hateful, ignorant, vacuous, and stupid, and my parents and family, who I see as very lacking in many ways of my problems generated by autism and the emotional openness that I desperately want. I often feel that I shouldn’t still have to be in high school, where I have to languish in a sub-standard education system amongst the idiocracy of my peers. Having to have been around numerous psychologists and IEP meetings, while helpful in it’s own ways, only make me feel as if I’m just some disabled kid nobody wants to deal with, instead of being given the opportunities I want and need.

Some people feel that people with autism need to be “cured”. As much as I support therapy and possibly medication for those who are particularly affected by this condition, a cure makes it seem as if there is something inherently wrong with us. Perhaps parents with children who have severe autism and are incapable of ever surviving on their own would be justified in finding a cure, but as for the rest of us, why can’t some people just see us for who we are, not what we aren’t? Autism gives many unique traits to an individual, and many of these people go on to do great things (it is said Isaac Newton, Albert Einstein, Bill Gates, and other innovators and scientists had forms of autism). I can’t speak for others - maybe they do want to rid themselves of their condition. But as for the parents and individuals making the decision, think about it: do you honestly want a cure that is going to change the individual you are?

So would I trade in myself to be another, “normal” person? Not for everything in the world. There are downsides to everything, but there are also it’s upsides. I may be friendless and isolated, but I’m also intelligent, creative, inventive, uplifting, and engaging. The qualities I have as an individual, be it influenced from Aspergers or not, is something that I find joy and happiness in. After all, if I can’t be happy with myself, why would I be any happier as something else?

By -L. Arias

World Autism Awareness Day April 2nd 2009

WAWD April 2ND 2009

Thursday April 2ND 09 is Autism Awareness Day. A day that hopefully the world comes together to reflect on the topic of Autism, ASD, Aspergers Syndrome, Aspies, The Autistic and PDD. I have three smart boys ages 10, 9 and 5. My two oldest have Aspergers Syndrome and the youngest has recently been tagged with PDD. Every family who has an autistic child is affected differently because autism presents itself in a multitude of ways. Some children are able to assimilate well into society. And with their autism comes the enlightenment/gifts of something special that they are able to pass on to us NT's. Then you have the non-functioning autistics who are unable to communicate, they are trapped in their bodies.

Sometimes people use the symbol of a puzzle to describe these kids. For some reason this symbol bugs me. I think it bugs me because it gives the impression our kids are not human. As you can see I have altered the puzzle image to look more human. Our kids are not puzzles! They are just not the majority in society. I completely understand parents wanting to find help for their children who can not communicate. Like any parent of a child with a disability you look for therapies. If we are lucky, these therapies work and your child shows neurological or social improvement. But autism is not a disease that can be cured. The child will always have some ASD traits. Maybe they will become more of an Aspie but the child is still autistic.

One of my biggest pet-peeves in the Autism community is when some one says their child has been cured of autism. Either A. they didn't have autism to begin with or B.The child has less severe symptoms. Autism is not a disease that can be cured. But it can be treated with different therapies. Social Development can be taught. For example : If a child lacks eye contact and is non-verbal; who receives full-time occupational therapy for two years. While also seeing a Taca doctor and that child starts to become verbal with eye contact; a parent may assume that child is cured. No, the child is just less autistic. Jenny McCarthy is one of those parents. She had the money and resources to treat her son's symptoms which have improved but he will always be autistic, a functioning autistic.

My next pet-peeve is how some in the ASD community say the fight "against" autism. To me and many others the word "against" sounds so negative. I am not against autism. My son who attends 5Th grade gifted class doesn't view his autism as a bad thing. As a matter of fact, my son has asked me not to "cure" his autism. Because, " It would change who he is". To make his autism disappear would be like wiping him off the map. Not supporting and accepting him for who he is. I would love to see the Autism Community show a more positive approach to how they advocate for the autistic. Because smart ASD kids are watching what we say and do. They need to feel supported by their communities. Let's not ruin our children's self-esteem people!

Pet-Peeve number three! Where is all the autism donation money going? I have three children with ASD. I haven't received any help. What are these charities doing with it? I am not going to name charities but you know who you are. Shame on you! Using our children to make money. While families could be helped with medical bills etc. One of these charities needs to step up to the plate and do the right thing.

There are many different theories as to the increase of Autism in the world. You have The Gene Theory, The Vaccine Theory, The Toxin in food/environment Theory, Military Theory and Conspiracy Theories. I believe we should look at all views. Why? Because I think many things can cause disabilities. Autism has been around since the beginning of time, so to think that one thing like vaccines is to blame, you would be kidding yourself. But could vaccines be to blame for some of the rise in neurological and physical issues of autism? Yes. If you can have a negative reaction to a medication that your taking, then why wouldn't you assume the same of vaccines? We are putting tons of toxins in our children's bodies at an early stage in life. It blows my mind when parent's aren't concerned about this or just chalk their child's autism up to genes. There is too much research out there to prove vaccines do and can make our kids sick. Some research even says 50% of cancers now could be prevented if vaccines were not used. 50%! Why wouldn't we be open minded enough to listen. None of us have all the answers. Do genes play a roll in autism? Yes, for some but not all. Open your eyes and see both sides.

Lastly, I get so peeved by ASD families that don't support each other. If I think your gluten-free diet is starving your kid more then it is helping; I am not going to say that to you. Every parent has to go down/up their own path with autism. I am here to support other families, even if your path is different then my own. There is no need for us to fight with each other. We need to support one another for the sake of our wonderful children. Autism Day is everyday in my house. On April 2ND the world tries to take a peek into my window. If that one day helps our children be more accepted into society, I say it is worth it.