A Family United For The Autistic and Disabled

Thinking College For Your ASD Child?

2011-05-26T06:05:00.000-07:00

This was just sent to me via email. I think it is worth sharing to our readers!
Special College Programs For Autistic Kids!

The Latest Autism Research Via PBS NewHour

2011-04-27T08:59:00.000-07:00

Last week, PBS NewsHour's, ROBERT MACNEIL reports on Autism in 4 episodes. He has a personal connection with autism because his grandson if also affected. I was impressed with his journalism and think this it is worth watching, if you haven't already. The link below will take you to the video episode that focuses on the most recent autism research and opinions.

PBS NewsHour - Autism's Causes

Watch the full episode. See more PBS NewsHour.

Blog Upated

2011-04-27T08:45:00.000-07:00

My oldest son just informed me that I needed to get my blog back up to date. It has been a year since I last posted on my blog. The past year seems a big blur and I think being a mom of kids with disabilities, speeds things up!

A few topics I will touch on this year:

1. I will be reviewing books sent to me by book publishing company, Future Horizons. They publish books about autism and other disabilities. I can't wait to give my review of Temple Grandin's book, The Way I See It.
2. Update you on my latest journeys with the education system.
3. Medical updates and new research taking place for Autism and Mitochondrial Disease.
4. Personal Stuff!

What's on the Menu?

2010-03-27T14:21:00.000-07:00

Casey Loves Hamburgers!

Aspie kids tend to eat the same foods. In our home we are always trying to introduce new foods in the hopes that something will tickle the kid’s taste buds. Casey our oldest son eats very few things. He would eat hamburgers everyday of his life if we allowed him. Now on the menu in the Dean house is milk, shrimp, snow crabs, chicken and biscuits with gravy, anything subs related, cheese pizza, sugar snap peas, bananas, apples, french toast sticks, breakfast egg and cheese sandwich, and let us not forget the french fry. Only Publix brand O.J. can be in the house because Casey can taste the difference. This is just to name a few of the very few items on the menu. We were blown away the other day when Casey came home and informed us that after an "Olive Garden" party in his 3rd period class, he officially liked spaghetti and meatballs! Surprising, since Casey's dad is Italian and we have never been able to get him to eat red sauce. Some days these kids just decide they like something. There is neither rhyme nor reason, it just is.

Baby Boy Morgan Dean Born March 9th!

2010-02-22T08:50:00.001-08:00

My little boy was born on March 9th. He was 9.6 pounds and 21.5 inches long.

Morgan Augustine Dean

For all those who follow this blog; I want to inform you that I will not be vaccinating Morgan. At age two we will have a test done to check his for his natural antibodies and only then will we determine our next move with the vaccine debate. At birth Morgan was given a 9.9 apgar score . He is a very healthy infant.

Things that make me thankful.

2009-11-09T07:33:00.000-08:00

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

2009-09-24T10:23:00.000-07:00

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

2009-09-06T19:16:00.000-07:00

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!

2009-08-08T20:12:00.000-07:00

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

2009-06-09T09:32:00.000-07:00

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!

2009-05-09T13:14:00.000-07:00

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

2009-04-27T07:50:00.000-07:00

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

2009-04-04T15:26:00.000-07:00

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

2009-03-31T10:03:00.000-07:00

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.

Autism Quotes

2009-03-22T14:53:00.000-07:00

Hans Asperger

Today I thought it would be nice to post some wonderful quotes about Autistic Spectrum Disorders. I am all about looking for the positive when dealing with my children's disorders. Or are they disorders?

"For success in science and art a dash of autism is essential " Hans Asperger

"Asperger’s syndrome has probably been an important and valuable characteristic of our species throughout evolution" Tony Attwood

"Someone with Asperger’s really is like you, just more extreme" Dr. Winnie Dunn

" Consider the following four dead-end kids. One was spanked by his teachers for bad grades and a poor attitude. He dropped out of school at 16. Another failed remedial English and came perilously close to flunking out of college. The third feared he'd never make it through school--and might not have without a tutor. The last finally learned to read in third grade, devouring Marvel comics, whose pictures provided clues to help him untangle the words. These four losers are, respectively, Richard Branson, Charles Schwab, John Chambers, and David Boies. "

I feel life is a journey and we all have to learn to ride the storm, for some of us it can seem more like a tidal wave, but with every storm the sun eventually comes back out. -Alyson Bradley

Chaos is in fact just an illusion created by your inability to perceive the order in which things truly are. -Alyson Bradley.

I may have been born different and misunderstood from birth, but I
know there is a place for me, somewhere in this universe. - Alyson Bradley

“I just want to continue to exist, but you continue to question my very existence!” – Alyson Bradley

Be the change you want to see in the world - Mohandas Ghandi

I like nonsense, it wakes up the brain cells. Fantasy is a necessary ingredient
in living, It's a way of looking at life through the wrong end of a telescope.
Which is what I do, And that enables you to laugh at life's realities. - Dr Seuss

I do not suffer from Autism, but I do suffer from the way you treat me.- Tyler Durdin

Not everything that steps out of line, and thus 'abnormal,' must necessarily be 'inferior. - Hans Asperger

Just because you're a bird doesn't mean you can fly...- The Ostrich.

The difference between high-functioning and low-functioning is that high-functioning means your deficits are ignored, and low- functioning means your assets are ignored. - Laura Tisoncik

Without deviation from the norm, progress is not possible"- Frank Zappa

I never set out to be weird. It was always other people who called me weird. - Frank Zappa

No Regrets

2009-03-16T11:58:00.000-07:00

Unity

Many of you who have been following me on twitter and who have read my blog are aware that I have been craving to have another child. My strong willed husband has been against this for over a year now. There are many reasons we should stop at three children. Money, housing space and health concerns. All valid reasons not to have a fourth child. I mean, honestly, I do have my hands full. I must be crazy.

But something interesting happened this weekend. My husband's mom came into town to visit. She is an old-school Italian woman. More stubborn in her ways then my husband. We started discussing babies and soon I was expressing how I was aching to have a fourth child. Everyone in the room rolled their eyes accept one, my mother-in-law. She said something that hit home to my husband. " Never have regrets. You never regret the children you have in life but you may one-day regret the children you didn't have."

The next day, my husband expressed to me he was now OK with us having a fourth child. He said, he didn't realize how bad I wanted another child and never wanted us to have regrets in life.

World Domination - Huh?

2009-03-11T10:08:00.000-07:00

I have to get something off my chest today. Venting is good for the soul. The other day another mom of an ASD child for the second time used the phrase , "So still working on World Domination?" Now the first time this was implied I shrugged it off as sassy sarcasm but the second time it kind of bothered me. Why would a fellow mom going through some of the same things as myself say something that sounds so negative? Is it because I have many different projects going at the same time? Is it because I have big goals and aspirations? Maybe I am too positive about my children's disabilities. I am still without words to understand. Maybe I am being too sensitive.

Let me just sum-up this short blog entry. I stay busy to stay sane. I push ahead to be strong for my family. I try to find the light at the end of the tunnel. I am no Wonder-Woman but I wish I was because then I could accomplish all that is in front of me. We moms need to stick together. To support each other. To love one another, unconditionally. For the sake of our children.

Would I Do It All Over Again?

2009-03-05T10:24:00.000-08:00

Many times I have asked myself, "would I have had my boys if I had known about their disabilities"? And the answer is yes. Motherhood is an amazing ride. When I had my first child I remember thinking, now I feel like I have a purpose her on earth. For years I felt like I was searching for something, I always felt a bit empty. When I became a mother it made me feel complete. I suppose you should be careful for what you wish for because God gave me a purpose and much more!

Sometimes when I think about how all three of my boys are affected with Mitochondrial Disease and Autism I get angry. Crazy thoughts of me being a defective person who can't have healthy children pops into my head. I still can't grasp how it actually happened to me. But I was searching for a purpose here on earth. My purpose, to raise the most gifted, special kids on this planet. Of course I am partial. :)

There have been other thoughts that have been passing through this thick head of mine. The thought of having one more child. I know it sounds crazy! I know the chances. But a part of me would love the opportunity to have a girl. If God decided boys were in my future I wouldn't be shocked just ready for what I already know. Yes, my track record shows I have a strong chance of having another child with disabilities. And I ponder the negative opinions that people would have about me getting pregnant. We don't qualify for government help, so that is not a factor here. But my husband is the deciding factor. I think he would be the most overwhelmed about the reality of having a fourth child. But as I continue to age and get one step closer to no longer being fertile, my maternal clock is ringing loudly, telling me to have one more. Arrg, I must be crazy right? I look at my children as blessings. They have taught me so much about myself and about life. Love you see, is an act of grace. And yet, I want one more.

A Bigger Family On The Autism Journey.

2009-03-03T09:41:00.000-08:00

The Kirton Family

Today I would like to feature another family on a similar path with Autism/ASD The Kirton family. I first learned of their story on The Discovery Health Channel about a 2 months ago. They were in a documentary called, "Autism X 6" which will be re-aired Mar 04, 8:00 pm, Mar 04, 11:00 pm, Mar 07, 1:00 pm (EST)

Robert (Bobby), boy, 14, - High functioning Autism
Emma girl, 10 - Aspergers
Nephi (Nee-fi), boy, 9, - Aspergers
Sarah girl, 6, - Classic Autism
Ammon, 4, - Classic Autism
Mary girl, 3, - PDD-NOS

Recently, I have connected via the Internet with the loving parents of this family. I am amazed by their strength and devotion to their children.
I don't have much of a support system in my state but through the Internet I have gained a large support system with families like The Kirtons to help me along my personal journey with Autism. Every family dealing with disabilities needs support from their communities. Many of us, sadly, receive very little locally. But through the Internet I have found a vast source of support and advocacy. I feel blessed to have found support and have met some wonderful people in the process.

Please visit The Kirtons site and read about their story. Learning from other families is key in our recovery and acceptance of Autism.

Analogy Of A Gifted Aspie Thinker

2009-02-24T12:40:00.000-08:00

Analogy : is both the cognitive process of transferring information from a particular subject to another particular subject (the target), and a linguistic expression corresponding to such a process. Gifted children tend to use Analogies in problem solving, decision making, perception, memory, creativity, emotion, explanation and communication.

One of the myths of Autism is that the Autistic can't show emotion or communicate well. Today my 10 year old gifted Aspie son completely broke that myth. Let me share some of our conversation today.

The topic of the economy came up. My son wanted to know the difference between a recession and a depression. From this sparked a new topic about the stock market and wallstreet. My son proceeded to tell me that Wallstreet was like an intoxicated driver on the road. Driving drunk with no police-men in sight to stop him. And sooner or latet the drunk driver would crash. As a parent, I couldn't help but be taken aback by my son's Analogy of Wallstreet and the drunk driver. He was, well, he was right. A 10 year old autistic kid just summed up very clearly with vivid imagery what the problem was. No laws to stop the system falling apart.

Many people use such a negative tone with the word Autism but this is yet another example of the light I see from my son and his "disability". I believe he views the world in a different image then you and me. I believe he has empathy beyond the normal human heart, just like his IQ. Einstein, Lewis Caroll and Van Gogh are all believed to have shown ASD traits. Does greatness come from some of these brilliant autistic minds? Are they meant to bring enlightenment to us here on earth that maybe we NT's can't?

Sometimes my son will behave a certain way and I will think how in the hell is this kid ever going to make it on his own? He has so many social issues. Yet, he loves the world around him and wants to be apart of it. He just doesn't know quit how to fit in. My mission as a mom is to help my son on his journey. Help him with his weaknesses and bring forth his gifts. So he may live a productive life, enlightening the world around us. Autism is a tough path to walk down or maybe we are walking up a path. It's how we look at it that matters.

DVD Program That Is Helping My Sons With Social Skills

2009-02-22T13:24:00.001-08:00

Today's entry is about a DVD program that I really like. I don't want to make my Blog about products for sale but every now and then I may find something so awesome I just have to share the information. Sue Klein from Model Me Kids sent me a DVD called Model Me Conversation Cues. I wasn't too sure how my two Aspie boys would respond to this DVD. To be frank, I thought they would completely blow it off and not be interested.

I was partially right. Both of my boys have completely different personalities. The oldest is a very gifted aspie and my other son is a very smart stubborn aspie. I popped the DVD into the player and observed their reactions. The program shows children role-playing social situations. It's an opportunity for my boys to observe how they should act in certain social settings. After the video was over my younger son was not amused by the DVD. He said, " I will not have a DVD tell me how to act." But surprisingly my oldest son said, " Mommy can you get me some more of those DVDs, I would like to learn how to make and keep friends." I was shocked. My oldest son had soaked up the information and wanted to learn more.

I believe my other son will come around since he is very close with his big brother. I recently ordered the Model Me Friendships DVD . This video will show my boys how to deal with rejection, how to participate in clubs, help them with body language and most importantly, how to maintain friendships. There are many other topics the DVD covers. I feel it will be a great teaching tool for my children who so desperately want to have friends but tend to not know how to go about it. If anyone else gets these DVDs please post your impressions of them here. I would love to see how they are working with other families.

A Bad Day On The Mito Journey

2009-02-18T11:17:00.000-08:00

Yesterday was a bad day for me. I try to stay tough and strong now with my children's illness but a simple trip to a follow-up appointment to the neurologist's office changed that.

Those that follow my blog know my children have Mitochondrial Disease. The two oldest are aspies The oldest and youngest have epilepsy. The youngest has been our NT in the family until yesterday. Master M. is now diagnosed with Pervasive Development Disorder. I asked the doctor if this meant he was going to be deemed Aspergers soon. He said, "probably so". Master M. was exhibiting new behaviours of with drawl. Not the same kid 12 months ago. All signs of regression from the Mito lurking from behind the scenes. Silently ravishing my children before my eyes.

The ASD diagnoses I can handle. I can accept having three children with autism. What put me a step back-words is when the Neurologist saw physical changes in his body. His muscles are becoming less tone. He has very little upper body strength now which will cause damage to his spine if not treated. Not only did he see this but he also saw the Oral Motor Dyspraxia and his lack of pain sensitivity. My son is deteriorating and fast. The Neurologist tells me we must start seeing an Occupational Therapist for treatment. Unlike my oldest children my youngest is starting to show stunted growth. All these things part of the Mitochondrial Disease.

Tears filled my eyes. The reality that I may have much more then autism to deal with hit me like a ton of bricks. I have always known that Mito can be life threatening but I have stayed positive that maybe we will be one of the lucky ones. Mitochondrial Disease is so silent. Sometimes you forget they have it. But this visit to the doctor's office was a dose of reality. My kids or kid may not be so lucky. So many parents struggle with their child suffering from Autism. I have seen the positives that come with Autism. I can deal with that. The hard thing as a parent for me is knowing I could lose one of my children and I have no control, there is no treatment.

I had a small pity party for myself last night. I just had to let some tears fall. I could see the darkness of my mind wanting to take over, put my soul in a bad place. But I have seen this darkness before and said to myself. I will not let this knock me backwards. I must keep pushing forward. I have to get up and make those important phone calls to specialists. I have to be there 100% for my kids. I don't have time to feel sorry for myself.

Dads Support Autism Too!

2009-02-14T09:41:00.000-08:00

I think it's important to talk a little about the dads out there that seldom get much attention with supporting their children with Autism. Frank is one of those dads who humbly sits behind the scenes advocating for all families affected by autism. Frank is wearing one of my Autism T-shirts. I appreciate all his support! And he inspired me to write today's blog on Valentines Day.

Dads love their kids too. They say that the divorce rate for families affected by Autism is 80 to 90 % but I don't think there has been enough research to prove this. Why? Well because of dads like Frank and my own husband. My husband was in denial of our children's medical issues at first but so was I. To be honest, he handled the news much better then I did. This old school Italian man was pretty stoic; while I was falling apart by the seems. Thank god one of us had our act together. Two stoic responses to our children's issues probably would have had us heading for divorce. Now we had our moments. I disconnected from him for almost a year. I feel so bad now thinking back. He wanted attention. He still wanted the passion we shared together but I didn't have it to give at the time. He would say, "we need to love each other through this rough time." And I would say depressingly,"but I don't have anything left to give."

"We" artist are very neurotic. And the news of our children put me over the edge. I felt at the time all my energy needed to be invested in the kids. My desire for sex was gone. My desire for painting was gone. My desire to be with family and friends was gone. I was in a dark state of depression. But my husband, stood by my side and waited. I started seeing my wonderful Shrink to get me back on track. Slowly, very slowly, I started to pull out of it. Instead of viewing my children's Autism and Mitochondrial Disease as a negative I started seeing the positives. My desire for life came back. I realized that I had to start redirecting my emotions into something good. And without my husband standing by my side, stoically, I don't think I would be were I am today.

MitoJack - A video that talks about a young boy with Mitochondrial Disease

2009-02-09T15:33:00.000-08:00

This is a wonderful video about a young man named Jack. He suffers from Mitochondrial Disease. This video really touched me because a few of Jack's Mito symptoms reminded me of my oldest son's symptoms. When I take my son to the grocery store he will often complain of being tired and he will beg to go home. He just doesn't have the energy to walk. Many times he has been known to sit down in the middle of a store. Watching this video made me realize what may lye in our future. Sometimes I still have a hard time accepting my kids are sick. As for now, we take it day by day.

Parents Sporting Autism & Mito Shirt

2009-02-07T11:28:00.000-08:00

Thank You Sue Klien from ModelMeKids for looking hot in one of my Autism shirts.

Kevin Rocking Autism Shirt

Kim Dean Rocking The Mito SHirt

G-Ma Kettles Rocking the Mito Shirt

Updated: Feb 11th 09 Thanks to SHelly R. for sending the blog such a lovely picture of her wearing one of my Autism T- SHirts. You Rock Momma!

I love it when other moms of children on the spectrum support my work. Lori from Rainbow Mum Forums sent me this image of her wearing one of my shirt designs she purchased in my Store. When ever I get pictures of those wearing my shirts I will post their pictures here. Thanks again Lori. Please visit her forums it rocks!

Top 10 Research Events of 2008

2009-02-06T09:08:00.000-08:00

How Does This Research Affect My Boys?

I am on the fence with some of these charities. I haven't done enough research yet to know exactly how I feel about each one but I am not 100% with any of them yet. The research Autism Speaks did for 2008 is very interesting. Some of it really hits home for me because I have had some of the same theories. The question for me is, how do I want to use the information? How much more do I want to pursue with my children? I always knew there was a Mitochondrial Connection. The study that really hit home for me was the Mortality and Cause of Death in Autism Spectrum Disorders . I think this was a a very important study. I will leave it up to my readers at this point to decide how these studies affect them and their families. I will continue my deep search within on this topic. I am sure I will post a blog at some point when I come to my conclusions. To view the Top 10 Research Events of 2008 click Autism Speaks.

MitoAction.Org - Understand Mitochondrial Disease and The Connection W/ Autism

2009-02-05T10:27:00.000-08:00

MitoAction.Org

Please learn more about Mitochondrial Disease. Visit http://www.mitoaction.org/blog. We as parents need to be aware that more then autism maybe going on in our childs body. My son is always tierd and sometimes I forget he has a Disease that is silent. I expect too much of him some days. Being a parent of a children with a rare disorder that few understand can be so frustrating. And sometimes I have to step back and just give my kids a break. Every Mito case is different, no two cases are the same. Which is what makes treating Mitochondrial Disease so hard. All three of my boys have Mito but the oldest is the most severe.

Lemonade Award - Cool Blogs

2009-02-04T10:31:00.000-08:00

My Lemonade awards

Big thanks to Melissa

Rules when collecting your Lemonade award………

Nominate at least 10 blogs that show attitude.

Be sure to link to your nominee's within this post.

Let them know they have received the award by commenting on a post.

Nominate your favorites and link to this post.

So here are my ten winners in No particular order:

Healing Through The Eyes of Autism

Autism Family Adventures

Cheers to all the winners!

Autism Eye Investigates : Charities

2009-02-02T08:15:00.000-08:00

This is what bothers me about some of the Autism Charities. Trying to cure autism without helping families with autistic children or adults with autism. We need to find ways to help those deeply affected by the severe cases of Autism but Autism is not always a tragedy. My son is an example of that. Einstein and Lewis Carroll are examples of how autism can have a positive impact on society. More energy needs to be put into helping families financially with medical cost to get the treatments their children need. More energy needs to go into showing that there are positive aspects that can come from autistic traits. If your child can not speak. Your child needs a cure or treatments to help your child communicate in society. But a gifted aspie doesn't need a cure. He needs understanding and acceptance. He needs communities offering him opprotunities to learn how to better interact in society. But how are these brilliant ASD souls going to do this if society keeps putting a negative vibe on the word Autism? This is my daily battle in my head. Something tells me these organizations are approaching the autism cause in the wrong manner.

Einstein: The Autism Connection

2009-02-02T07:56:00.000-08:00

Through out my blog I will from time to time point out people in History who showed ASD traits. Autism is not always a tragedy.

Lewis Carroll: The Autism Connection

2009-02-01T16:32:00.000-08:00

"For Success in Science and Art a dash Of Autism Is Essential."- Hans Asperger

Alice in Wonderland

I find this video to be lovely and interesting. Regardless of how our children became autistic we must acknowledge the gifts of the ASD brain. Sometimes , I ponder the brilliance that would be lost if for example my Son's Aspergers was cured. I have already discussed in a recent entry that my oldest son has has requested that I not cure his autism. He him-self embraces his differences and his gifts.

Many Views For The Support Of The Autistic

2009-02-01T13:33:00.000-08:00

This is just a short rant. I want everyone to know that this blog is for all aspects and views of autism. I am just writing about my life and journey raising my boys. Sharing with you my thoughts right or wrong, that pass through my mind. I want to hear from everyone who is some how connected with my journey. I believe, we, as a society, should support the autistic and not put such a negative vibe on a word that can mean so much positive stuff. I will stop now, with my rant. Let's just share our journeys and try to be united in loving our kids the best way we can. I would Love to share with you one of my favorite little reads called: The Geek Syndrome

The Big Vaccine Debate! I am in the Middle.

2009-02-01T09:47:00.000-08:00

I wanted to talk about the Vaccine topic a bit today. Because I know it's a hot topic among us parents with children who have Autistic Spectrum Disorders. You are probably wondering how I feel about this issue . Well let me first say, the Hannah Poling case really is what made me take a hard look at my own situation with my children. Why? Because like Hannah Poling my children too have a metabolic disorder called Mitochondrial Disease The Government health officials had conceded that childhood vaccines worsened a rare, underlying disorder that ultimately led to autism-like symptoms in Hannah, and that she should be paid from a federal vaccine-injury fund.
Now I have not approached the Vaccine-Injury Fund even though all three of my boys have Mitochondrial Disease but I do feel there is a connection with my children's ASD traits and the vaccines. Do I believe all autism is cause from vaccines? No. But I do think that the vaccines are very toxic and are not safe for many compromised amune systems. I believe the government needs to have better regulations with the vaccines. These vaccines should be cleaned of all the toxins. All three of my boys were normal at birth. They walked by 11 months. They were talking early. Nothing seemed odd or off. Not until around the age of three did we start to notice behaviour changes in our children. And it seemed as though these changes just progressed as the children aged. And let's not forget I was in complete denial at this point anyway. To me my kids were perfect. They may be odd or different but I looked at that as something special. Casey was so smart. All smart kids act weird, right? I want you all to know that I wish I had been a smarter mother. I wish I had seen the signs sooner. All my boys ran the typical high fevers after their shots. Casey once got really sick to his stomach after a visit with his pediatrician. I just thought he picked up a virus from the doctors office. The nurses always told me the kids may run a fever so it never dawned on me that my kids were having a bad reaction to their shots. If I had a chance to do it all over again. I would have never chosen the path to vaccinate my kids. Or at least, I would have had them stretched the vaccines out so they didn't have to take so many at one time. I have a lot of regrets about all this but now I have to deal with my reality and push on. I could have filed a claim for the Vaccine-Injury fund but once I looked into it I was turned off by the circus of lawyers and so on. I just didn't have enough energy to fight another battle.

My doctors have not been able to pin point the type of Mitochondrial Disease my kids has. There are thousands of different mutations. Many That have yet to be discovered. Most children usually inherit the disorder from the mother but nothing yet points to me being the genetic glitch to their disease. I am healthy and strong. Now my kids Neurologist says one day it may all hit me at once. And the Mitochondrial Disease will present itself. But Mitochondrial Disease can also be caused by environmental factors, even certain medicines that may interfere with the mitochondria and result in symptoms.

So I have a theory with the Mitochondrial Disease and vaccines. I believe since some Mito cases can be caused by environmental factors, and even certain medicines, that when the babies are given the vaccines their Mitochondria are damaged. This damage causes the disease and with the disease comes the many Neurological issues such as Epilepsy, ADHD, Sensory issues and Autistic Spectrum Disorders. If this happened to my kids, I am of course very angry. But in order for me to heal and be a strong supporter for my children, I have had to let go of this anger. I have to now step up to the plate and support my children the best way I can. I can't turn the clock and have a re-do, that isn't an option. But I can try to inform other families out there to be very cautious with what they put into their children's bodies. And most importantly, don't assume everything your pediatrician/doctors says is true. Doctors don't have all the answers. Most of the time they make educated guesses when it comes to our children's health. Their job is not an exact science. If your gut tells you not to do something. Go with your gut. If your gut tells you to see a different doctor, go see a different doctor. God has given us a natural instinct to know when something isn't right. And may I also add. Don't be like me , in denial there is a problem. Try to realize that just because your child isn't perfect doesn't mean they don't have wonderful gifts to offer the world. My kids will have a great impact on this earth. They just need loving guidance and support.

Watch this great video about the MMR and a study done in Europe. It's a long video but worth the watch!

The Boys and the Noise!

2009-01-31T18:00:00.001-08:00

So I am going to attempt to write something in my blog everyday. I am not use to writing about myself or my life to be honest. I mean, if people ask me a question I will talk but I am more like a guy when it comes to spilling my emotions all over the place. I think maybe I do the emotion spilling on my artwork, so it leaves me a little empty with words.

Back to my topic, The boys and the noise. Yes, one pet peeve I have with raising three children with different disability issues is the constant noise. I have friends who try to tell me it's just as hard with one child. But let me just say this, no it is not! My first child sits on a computer all day. He makes very little noise unless provoked or challenged. He would not eat or sleep If I didn't maintain a proper schedule for him. The oldest is 100% gifted aspie. He is text book in his behaviours and attitude. He will only par-take in the aggrivation I call noise if the other two drag him into it. Which is a common accurance in my home.

The noise comes from the middle ASD child intaganizing the youngest NT child. They are like oil and water. I am ashamed to admit that they cause me to use fowl language when they get things started. I am the type of person who hates conflict and chaos. Yet, God put me in a life with lots of conflict and chaos The middle child will start annoying the NT child and soon the NT child is teasing the easily teaseable Middle child. Finally, all hell breaks loose. The sad part here, is that at some point I am bound to lose my composure and will participate in this chaotic noisey mess.

Once the boys are in bed. I re-group and find my core inner-self again. Then I ponder my reactions to my crazy evening with my kids and I get down on myself for losing control. It is like living ground-hog day over and over again. It's very common to hear me say how awesome it would be to have a nanny a few days a week. Being a parent can be a stressful job!

Make-A-Wish Rocks 2009!

2009-01-31T17:48:00.001-08:00

Craig Stanton Puts the Make-A-Wish Sticker on the car with the boys.

The Deans hanging out at Race.

Dean boys trying to deal with the Loud engines noise of the race cars.

2009, Make-A-Wish sent my 3 Mito boys to the Rolex 24 in Daytona this past weekend. Casey helped race car driver Craig Stanton put the Make-A-Wish sticker on his car(#65) before the race startedd. The kids hung out with the crew and staff of Childress-Howard Motorsports which inclued drivers Andy Wallace, Rob Finlay, Casey Mears and Female driver Danica Patrick. The kids had a once in a life time experience. Make-A-Wish is an amazing organization! Thanks again!

Snow is Good For Mito Kids - Thanks to Make-A-Wish

2009-01-31T17:27:00.000-08:00

My oldest Aspie/Mito son Casey made a wish. To see snow! We are from Florida and snow is not something that visits these parts. Make-A-Wish sent our family to New Hampshire Dec 18th-23rd. We had a blessed visit. Words can't describe out beautiful it was and how happy it made Casey. The one thing I learned from the trip. Florida heat is bad for children with Mitochondrial Disease and cold weather is good. My son went skiing. Skiing! He never plays an active sport. But the weather allowed him to enjoy himself and not get over-heated. Our family has already discussed the possibility of moving up north in the future because of this wonderful eye-opening trip! Thanks Make-A-Wish!

Make-A-Wish

Autism is not a Tragedy, just a long Journey

2009-01-31T17:09:00.000-08:00

"For success in science and art, a dash of autism is essential"
–Hans Asperger-

My journey with autism has had many paths. At first, I was in complete denial anything was wrong or off with my perfect children. I think many parents over look the things that pop out and say autism at first. For me, I just saw a gifted smart child who was a bit clumsy and different. I admit, I was in denial for some time and because he was gifted the teachers couldn't really pin point the problem either. They would just say, "Your son isn't like the other children" etc. Of course he isn't, I would say with love in my heart. He is gifted. Being in private schools probably didn't help because they tend to coddle the parents.

A few years later the health issues started to pop-up and at this point I decided to have My oldest son's IQ tested by a well known Physiologist. This would be the turning point in his diagnoses. He did test out gifted but she noticed he was off task and had sensory issues. She also noticed that My son had convergence issues with his eyes. Which means his eye's muscles weren't working together so in theory he was seeing double. Yet, this gifted child learned to read at the age of four. So off we went to the next doctor. An , eye doctor who confirmed yes, he had convergence issues with his eyes. After the third visit to his office the doctor stopped in the middle of an exam and said, "something else is going on here, I think I need to send you to a Neurologist". Now you must know, for what ever reason, each doctor annoyed me. Maybe it was because they were getting closer to the answer that I was avoiding or resentment of what was to come but I never liked most of my sons doctors.

Now, at the same time we were referred to a neurologist my son started to have wondering/daydreaming spells at his private school. And for the first time his second grade teacher used the A word. How dare she! My son's social behavior's became more and more inappropriate. Like the time all the kids in his class had to make birthday cards for a little girl and my son wrote in his, "Happy Birthday you bossy little girl". Or the time in advanced reading group he screamed at the kids that he would no longer read with them if they didn't use more emotion in their voices. " Little social issues like this were becoming a common daily experience. Also, my son had few friends. At P.E. he would walk the playground by himself. He would come home and cry telling me no one wanted to play with him. This broke my heart. I decided to take my son to a well known Shrink.

In the middle of seeing our new shrink we also went to see the Neurologist who I was not impressed with. She checked my son out, had him jump on one foot etc. And then said they would do an EEG to see if he was having seizure's because of the wondering/daydreaming issues at school. In her office visit she saw no neurological issues. So we pushed on. Next stop was the new shrinks visit. The moment he met my son he knew something was different/wrong. He talked to me, took notes, talked to my son and then said, " Your son reminds me of another patient I have who has Mitochondrial Disease." He advised us to have an OT evaluation and to see a geneticist for some testing.

The OT evaluation determined my son had hypotonia and he was hyperflexive. Which means he has poor muscle tone/strength and his joints are very flexible/bendy. He was also diagnosed with sensory issues. Next stop, the geneticist. She did lots of blood work and genetic testing look for any problems. All which came back normal. She then decided because of my son's other issues with Sensory/Muscles and Fatigue she would have a muscle biopsy done to see if there were any issues with his mitochondria. Weeks later and the results showed a lack of cytochrome O. and odd muscle fibers which were usually seen in people with Mitochondrial Disease. They put my son on supplements since there is no cure for Mitochondrial Disease and did more genetic testing. They were never able to figure out the type of Mito my son has. I talked to the scientist who did the lab work and she told me it is like finding a needle in a hay stack. We may never know.

Our last visit with the Geneticist was a good one. My undiagnosed Aspie had a melt down in her office. The Doctor looked shocked and concerned. She informs me we need to have him checked out for autism. Oh no, she used the A word! I was pissed. But deep down inside I was starting to realize something more then all the other issues was going on. What I didn't realize at the time was that Mitochondrial Disease can cause Autistic Spectrum Disorder traits, as well as other neurological/physical issues my son was experiencing. It was all connected but at the time I was clueless to this fact and to be honest so were some of the doctors.

At this point my second child is now having behavioral issues in school and is now seeing the shrink for Adhd and Anxiety. Both sons are on medications for ADHD but it doesn't seem to be helping them in school. I bring the conversation up to my shrink that maybe my oldest has autism. The doctor who has helped us so much at this point hates to put autism tags on children hesitates and says your son is very bright. Are you sure you want this in his records? I, at this point am ready. I think the doctor was waiting for me to get to this point because he already knew I was in denial. I was ready. He said, my oldest son was very high functioning and was more Aspergers in behavior. He had the classic high IQ which is common in Aspie's and that is why they tend to get late diagnoses. He and I discussed my middle child who at this point was being treated for Bi-polar disorder but the meds were not working. The doctor said the middle child was High Functioning Autism with more behavioral issues.

The next big kick in the butt was my kids getting kicked out of private school. My whole life I had dreams of my boys being in private schools with small class rooms and close friends. My image and dreams of my family were slowly changing and I have to admit I went into a deep depression. I went to a conference at a local hospital on Mitochondrial Disease and was given the name of a wonderful Neurologist in my area. I was excited that I had found someone who was up on Mitochondrial Disease since few knew much about in in my state.

I made appointments for all three of my boys with this Neurologist. I had all medical information sent to him. He had a long visit with me and my boys. Did some testing in his office and told me to stop spending money on more genetic testing. He said, he has seen Mito cases for years and there are certain things all these children tend to exhibit. Mitochondrial Disease tends to hit many in a family. All three of my boys had neurological and physical symptoms. He ordered MRI's and EEG's on all my boys. My oldest son's EEG came back showing he was suffering from Complex Partial Epilepsy which would explain his moments of daydreaming and loss of memory. My youngest also showed signs of Absent seizures. Epilepsy is another symptom of Mitochondrial Disease so the puzzle was slowly being put together.

The kids were put on the proper medications. I started my process of dealing with the public school system and IEPs. My mourning process began too.. I was absolutely depressed. I felt I had been robbed. All three of my kids? How could this have happened? Why did it happen to me? I did everything right! I was a good mother. I breast-fed all my children. My husband was as good father. I was never sick as a child nor was my husband. All these thoughts went rushing through my mind over and over again. With help of my shrink and time,I slowly healed. I had to mourn the loss of the family I thought I had and had to learn to accept the family that was now my reality. I was stuck in a dark place for a long time. I am ashamed to admit this but I was so sad. I withdrew from my family and Friends. I just couldn't understand what was happening to my family. All my dreams of the future were now gone. And I was ashamed of myself for feeling this way.

A good 16 months has past and my mind is in a different place now with my children's diagnoses. I feel I have my power back and I see the light again. I am not going to let my children down. I am going to be their rock. I see they have so many wonderful gifts to offer the world and I want to help them get there. Now my goal is to help not only my children but others. I use to think I will cure my kids. And did searches for days on how to heal them. Then one day my oldest gifted aspie son caught me searching cures for autism. He asked me if I was trying to cure his autism? I was shocked by this questions and did not know how to answer. He said, "mommy, I like myself just the way I am. I don't want to be cured because it would change who I am." This floored me! I told my son I was not trying to cure his autism. Just trying to do some research about autism.

That one moment with my son changed my view about how I was going to approach my journey with autism. I realized that not accepting my son's autism to him was not accepting who he was. I want my child to feel important and to have self esteem. I want to empower him and give him the tools he needs to integrate enough into society to make it. But I don't want to change the coolness of my son that maybe he wouldn't have had he not been given Autism. I don't have all the answers. I understand there are children deeply affected by autism. These children can't even speak and say they love their parents. I believe in cures or treatments for these children. But I also believe society has to have more acceptance for the children that are not so severe. These children have many gifts that come from their asd traits. I embrace their brutal honesty, cute since of humor, incredible creativity and their odd yet sincere understanding for humanity. I don't want my kid to be like every other child. I want an individual who leads not follows. My goal is to help them socially connect enough to bring forth their gifts to the world around them instead of being isolated and confused. Autism is not always a tragedy. Good can come from all this. See the light in your children and give them the acceptance they need to grow.

Warmest Regards,
Kim