Single Moms Raising Autistic Sons


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Saturday, January 30, 2010

The Best Psychologist For Griffin... Imaginable

For starters, I canceled the IEP meeting until I can get one of the advocate from the Autism Society to go with me. With that said.....I took Griffin to a new psychologist yesterday and boy was I ever impressed! He was amazing!

First of all he engaged Griffin and interacted with him and didn't just sit there and talk to me about Griffin. He put a video on for Griffin (Milo and Otis) and as he was talking to me he was observing Griffin and how he was reacting to the movie. So, when Griffin would laugh at the movie the doctor would pause the movie and ask Griffin what it was about the movie that he liked. Griffin was not forthcoming but I thought that it was great that the doctor made that effort.I appreciated that he talked to Griffin and interacted with him and not just talking to me as if Griffin wasn't even in the room. He talked about Griffin's sensory issues and reminded me of how they affect him and cause his meltdowns, and I say remind because I have forgotten how sensitive he really is to external stimulation and all the other doctors that we have seen have not mentioned it so I have not given it as much thought as was needed. So, I was grateful for him to remind me of this. I needed to go back to the elementary/rudimentary education that I learned about so many years ago because his meltdowns have increased lately and I've got to help him avoid them instead of just coping with them once they've begun.

When I told the doctor that the school was trying to take away Griffin's speech therapy he shook his head in disgust and when I told him which school he told me that he wasn't surprised. He made sure that I was going to have an advocate go with me from the Autism Society and I confirmed that I was. He expressed that if he didn't have communication delays/issues then he wouldn't be autistic, which actually one of my followers had mentioned to me in her comments. Let's think about it.....autism = communication delays + social delays + (in Griffin's case) hyperlexia = all that he was working on in his speech therapy.

This doctor had asked me what I wanted to accomplish by seeing him and I told him that I wanted to address the meltdown issues. And I had mentioned the medication. He kind of chuckled and let me know quite frankly the lowdown on how it all works.....if I go to see him for advice then he is going to use a psychological approach in dealing with behavioral issues, whereas if we go to a psychiatrist or pediatrician then they of course are going to talk about medications. So, it was important for me to decide which one it is that I thought was the approach that I wanted to take. I was so immensely impressed by him that I let him know that I wanted us to come back to see him as soon as possible.

We got about a foot of snow, went out and played in it last night and today. Thank goodness we didn't lose power as was predicted. Griffin just loves it and so does Abby. We have lots of food so we are well prepared for being stuck here for several days. There are 3 cars stuck at the entrance of the entire apartment complex so there is no way in or out. Hope there is no emergency or no need for the power truck to get in or else they are out of luck. We stay busy on the computer, reading, Griffin plays with his Legos, I do cleaning and studying so it's not so bad.

Thursday, January 21, 2010

The System Wants to Take Away His Speech Therapy

Finally, after how many months? Let's see....school started in August of last year and I have practically been begging for an I.E.P. ever since then and yes I even put it in writing and nothing ever came of it. They lollygagged around so that they didn't get in trouble with the rules, the took their time testing and such and NOW that school is practically over, in a matter of a few months.......they want to have an I.E.P. and better yet they want to take Griffin's speech therapy away from him!

I spoke to his speech teacher last week and she told me that she feels that his speech issues is just a matter of self-esteem and that his peers can understand him just fine. Well, let me tell you this my friend...NO they cannot! When I took Griffin's service dog for show-n-tell one of his peers came up to me and asked me what was wrong with Griffin because she couldn't understand what he says. Then this winter one of the neighborhood kids came up to me and asked me what Griffin was saying because he couldn't understand him. And...to top all that off....half the time I can hardly understand what he says myself!

Granted, he is doing much better at slowing down and annunciating his words much better without me having to ask him to but there are still times that I have to ask him to repeat himself several times in order to understand what he has just said. And exactly what does she mean by self-esteem issues? Does she mean that my child has a home life that is so hard that he cowers when spoken to in public? That when he is around others he doesn't know how to act because he doesn't have a good example to live by at home? What does that mean? And how could it not be a direct insult to me? I AM the only parent he has and the ONLY influence that he has so it would have to be me who would be to blame right?????

Let's just say that his peers could understand him. Then we still have the hyperlexia to deal with. He still needs to work on his reading comprehension. He still needs to work on his conversation skills on his socialization skills. All of these he was working on in his speech class two times a week and I do believe that it was helping him and making a big difference. So, why would his teacher want to take it away from him? I cannot figure this one out. Does anyone have an idea? Apparently medicaid is paying for the class so it is not a funding issue, there is no funding conflict with his private speech therapy. And the fact that he is taking private speech has zero influcence over whether or not he gets it in school or not. Besides they are working on completely different issues in private speech anyhow.

Any ideas anyone? I was hoping that Griffin's new case manager would be helpful but he came over today and didn't seem to be so willing to pull for Griffin. I mean he will be going to the meeting but he was saying that if it didn't work in Griffin's favor then.....Well, by *** it IS going to work in his favor because I am NOT going to sign an I.E.P. that does not include speech therapy end of story!!!!!

Sunday, January 17, 2010

Seven Things About Myself

I wasn't tagged but I thought that it might be fun to have a go of it to give 7 things about myself that my new friends don't know but MIGHT find interesting. Here it goes:

1. If you check my photos you will find some pretty risque photos of me and wonder what the heck they are all about. Well, I was an exotic dancer/showgirl for 6 years in Alaska and in Las Vegas. I really did NOT like it but made tons of money which allowed me to travel around the United States and Europe but now how nothing to show for it other than experience. And NO I do not look like that anymore! Many women think that it is a glamorous occupation but it is very challenging emotionally and psychologically.

2. I used to be a ballroom dance instructor for Fred Astaire Dance Studios in Anchorage, Alaska. Loved it but it paid very little so I didn't stick with it, couldn't live off of how little it paid. Worked two jobs but it was too exhausting.

3. For several years I worked for the FBI as a Confidential Reliable Informant doing undercover drug sting operations, which meant that I was paid to do drug deals and then testify in front of a grand jury in order to have the target prosecuted. I was not the kind of informant who had to cooperate in order to get a lighter sentence and such, I was actually sought out and hired to do this job. They came looking for me. It is really a long story.

4. I was diagnosed Bipolar I with PTSD in 2004 when Griffin was 2 years old. I have been through HELL and back in my life because of them but mostly before I even knew but since knowing and working on trying meds it hasn't been quite so bad. I have a wonderful doctor now and am feeling great. Griffin is Bipolar also and ADHD. I also have Fibromyalgia.

5. I had always believed that I was nothing without a man in my life and especially without a husband for that matter so I kept trying and trying and no matter what I kept making poor choices and I now know why (I was an undiagnosed Bipolar with severe mood swings) but in the end.......I married 5 times!!!! Yep, 5 times!!! It was not all bad, two of them were my very best friends and one of them still is but lives in London. I don't regret it but for sure have learned a valuable lesson from all of them. The experience has given me great strength and insight.

6. I am a student who takes online classes and my major is: Child and Family Development and I plan to get my masters in Autism Research! I am so thrilled to be headed in that direction I cannot wait. It seems that I will be in school forever but I am enjoying learning and welcome all the challenges I face with each new class.

7. This kind of has to do with me but more about me and Griffin and our lives: Griffin's father disappeared as soon as I told him that I was pregnant. I met him when I was working undercover and he didn't know who I really was, and didn't get to know until much later. Once I figured out that I was pregnant I decided that I was out of the drug dealing business, it was far far too dangerous. So, I don't know if it upset him and he just didn't tell me or what. When I knew him, he was an awesome man, generous and kind-hearted. So, it was a big shock when I couldn't find him. I hate it for Griffin and hope that one day he will get to meet him.

Thursday, January 14, 2010

Positive Thinking During Times of Adversity


I was having a conversation with a friend of mine about how some people complain when they have tough times and how they do not take into account that the person they are talking to might just be going through their own stuff and need someone to listen to them as well. I believe in being a good listener no matter what kind of stuff is on my plate because no matter what kind of adversity I am going through I realize that my friends have feelings too and need a shoulder to lean on and an ear to bend. It's important to me to always stay positive and to not complain but to count my blessings regardless of what life is throwing at me. I do not claim to be perfect by no means and I do have my moments but all in all being positive is my main MO. I do not mind when my friends vent or let it all out because that is what I am here for, I pride myself on the fact that I am a good listener.

I love my friends dearly and I purposely only have a few that I truly regard as my close friends. The reason for this is that I have built up a repore with them and through the years have grown to love and trust them with my inner most thoughts and feelings, and in kind they have done the same with me. There are many new friends that I have who I look forward to getting to know and building a friendship with, those in which I have found I have much in common. It is exciting to find new friends especially those who are so different but who still have many of the same feelings and issues that I have.

I am a believer that we meet those who we are supposed to meet, that it all happens for a reason. There are lessons to be learned in every relationship that we have. I am always eager to learn, I am a student of life and always welcome new challenges. I am not afraid of adversity as I have had my share throughout my life and I am sure there will be plenty more. I appreciate the times when there is peace as I breathe it all in and give thanks to the powers that be. Perhaps you think this to be quite mushy and unrealistic but it is truly my philosophy and my outlook on how things should be for me........perhaps it's not for you but it works for me.

I wouldn't be able to make it through life without being positive, I believe that with negativity comes sickness and stress, and this is why I am never ill. Yes, I do have mental illness and a few physical issues but I attribute them to my genes not my attitude. They are simply part of me and something that I have to cope with on a daily basis. I still have a great deal in my favor: I am a student who is making excellent grades, my child is healthy and doing well in school, our animals are well and loving, we are always safe, we have a vehicle that is reliable, we have electricity, water, the Internet, a computer, food, shelter, and the list goes on.....

It is the small and simple things that mean the most and if you ever call me you can rest assured that I am going to listen to you and show you that I genuinely care!

Thursday, January 07, 2010

To Griffin: As You Grow Older, You Will Always Live in My Heart




My Dearest Griffin,
As I watch you grow into a young man it brings tears of joy yet my heart aches too because it means that one day, as time rushes by, you will cut the apron strings and be independent....needing mommy less as time goes on. I wish for you, my love, to be happy above all and to find love in a different way, that I cannot provide, and experience all that it brings to you. Right before my eyes you have grown and progressed far more than I had imagined you would at this age. On the 31st of this month you will turn 8 years old and I can't help but to think of how far we both have come. It seems like yesterday when I first held you in my arms and cried because I had never felt such intense joy and love in my life. I cried because I was grateful for such a blessing that I didn't think that I deserved but, we were destined to be together. And to this day I give thanks for you, my precious son, and for all that we have been through together. We made it through 5 years in Alaska as mommy was having severe depression while trying to get you all the therapy and help that you needed. It was a very hard time for both of us as we were very isolated from the outside world. I had virtually no support and many days would pass without even seeing another soul. The winters were especially hard for both of us. We both had severe insomnia and it took years to finally find a way and the right medicine so that we both could sleep. You weren't talking back then and I wondered if you and I would ever be able to carry on a conversation or if I would ever hear you tell me that you love me.

I have not mentioned the autism because it is merely a part of you and the two will never be seperate, therefore I am grateful for who you are and everything about you. With each passing year the autism is less distinguishable and now you have come to a point where you are actually making friends at school and in the neighborhood, you are also learning how to better communicate and you seem to be very proud of your accomplishments. There are still times when you have trouble with transitions and moving to your own bed is one of them. You keep trying, bless your heart, but each time you are drawn to snuggling with mommy and you know what Griffin? I am having a hard time with letting go as well.

You and I are bonded forever and no matter how independent you become, I will always be by your side one way or another to lend you a hand if need be or to shine the light for you to walk the path you need to on your own. I must prepare you for the day that I am no longer around, which means that I must practice letting go little by little and to teach you about the world so that it won't be a scary place when mommy has gone away. I do not plan on leaving you, Griffin, for I shall fight to the bitter end to be around for you whenever you need me.

I can't help but to wonder what the future holds, what with dating and all, and how you will react to the girls when that time comes. You are a handsome boy and I believe that the girls will notice you but will you even care? Those are just silly thoughts that pass through my mind but mostly I live in the present in order to not take for granted the blessings before me. In some ways, the autism has been a gift for us that has given us strength to get through all that life has thrown at us. We have made it so far without the help of your father. I do hope that you get to meet your father one day. He was a kind and big-hearted man when I knew him, but something went awry and mommy doesn't know why he disappeared . But I will do all within my power to help you if that is what you want, you have so much of him in you and it makes me proud because he was a good man. Sometimes life just doesn't make sense.

As long as you smile and laugh each and every day, I will assume that you are happy and that things are going smoothly. The rest is minute and I know that we can handle it together. Mostly, what I want to say to you is "Thank YOU" for being in my life and teaching me so much and showing me that life is beautiful, that there is more positive than negative and that is what we must focus on. I ask nothing of you because your mere presence and your smiling face is my gift and I know that, as you have shown me, with time your behaviors will subside because I will always make sure that you have the best doctors and the best medicine that will help provide a better quality of life. You are an intelligent child, Griffin, and you are learning so much and so am
 I!





Wednesday, January 06, 2010

My Letter to Griffin. Originally published December 2005, Griffin was 3 years old



My Dearest Griffin,




I remember the day that you were born, the joy that I felt was so overwhelming I thought that I would burst. Tears of joy streamed down my face and I knew at that moment that you would be the center of my universe for the rest of my life. You are my 'sonshine" and the love that I feel for you is so intense there are no words to describe it. It has been just you and me kiddo, and even though we don't have much we get by and perhaps we are much stronger for it. Griffin you have enriched my life more than anyone else. You have been a teacher to me that is, you and your autism have taught me about many things but mostly about myself. I have learned to be tenatious , strong, gentle, compassionate, patient, understanding, and a good listener. I feel that you have taught me far more than I could ever teach you. For this I must say that I am grateful.

There is nothing in my life more precious than your laughter. When I see you smile and hear you laugh there is no autism. All I see is a beautiful child filled with the quentessential perfection . You are as perfect as the day you were born, you are exactly as you were meant to be. No one can tell me that you have a problem, a disease, or that something is wrong with you. I see you, I understand you as Griffin with autism and if it happens to go away one day then it will be a day of celebration but if it doesn't then you are still my perfect child. You see my love, I have no expectations of you. You will progress at your own pace and I will be happy for every step that you take be it big or small. I don't know what the future holds nor do I want to plan it out as if I know what will happen. I want for us to take it one day at a time and cherish each moment in that day.

What I wish for you my sweet child is pure happiness . Since you are autistic then let us celebrate your differences, let us have pride in who you are, let us let the world know that autism or not you are Griffin and that you are an individual who deserves respect and recognition as a human being and a part of our society.
You may or may not be able to live alone or drive a car one day but you might be a writer or a mathmetician. There is one thing that I do wish for you to learn and that is to understand what danger is. If you could learn that Griffin your mommy would feel more at ease and more secure. Otherwise, I think that you are the most fantastic creature on the earth and that I have been blessed with you.



With All My Love Forever,

Your mommy

Sunday, January 03, 2010

Bouncing Off the Walls


Griffin chose this photo of his cat "Dot", he loves her so much! Griffin has been bouncing around the apartment like a pinball and I am just as bored. I was bouncing yesterday but feel better today. I have been spending waaaay too much time of Facebook, one of my friends actually dropped a hint. What can I say? There's not a lot to do inside all day after all the cleaning is done, I even searched for a few things with no luck, but the computer is an outlet for both of us. It is nice to be able to communicate with adults, especially since we practically never have any visitors here. At least Griffin has Legos and toys to play with when not on the computer but I have little else to do. Sure do look forward to getting back to my studies tomorrow and I am pretty sure that Griffin is ready for school (and to get away from me too). Earlier today, Griffin was having a string of mini-meltdowns and I couldn't figure out why. Then it occured to me that maybe since he still had on two layers from going outside that maybe he was feeling hot and couldn't tell me/didn't know how to express it. Sure enough, as soon as he got them off they stopped. Thank goodness!!!!

I have found some great blogs from Ireland, my new FB friends, and look forward to following them as some of the children are quite young and newly diagnosed. I am hoping that I can share my/our experiences with them and perhaps they can find something that is valuable. I have also met a woman here in the USA who has an autistic son who is now a teenager in mainstream high school classroom and I'm eager to hear about what it's like to have an autie teenager. Seems kind of scary to me, puberty and autism ARGH! My friend Vicky tells me that Griffin is so handsome that the girls will be noticing him before he even takes notice of them. I can't help but wonder how he will react to the opposite sex. One day soon, I will post a photo of Griffin's father and you can be the judge of whether or not he looks like him. I think that he looks just like his dad, who is Samoan. And that he looks nothing like me. I will have to do a side-by-side so it will be easier to tell.

Well, it's almost time to brave the cold again (finally above the teens) 22 degrees and take Abby (Griffin's service dog) out for a short walk. I think that I will write in my online journal, there's something productive to do!!!!

Hi Jazzy! Thanks for dropping by and reading my post about the link between autism and bipolar disorder. It is nice to meet kindred spirits! This could be the beginning of many a year of friendship. I have been blogging since 2005 and are still great friends with many women I have met through here, so I look forward to many years for us!

Saturday, January 02, 2010

Saphris is Not Working.....Manic Today!


I have been weaning off of Seroquel and trying to just use the Saphris and it's not working. I am feeling manic today and it has increased my appetite exponencially. I can't sit still and all I want to do is to constantly eat. So, I just took another 200mg of the Seroquel in hopes that it will help balance me out. I only took 200mg of it last night, the first night on just the 200mg and I guess that is why I am feeling so manic. I have weaned down from 800 mg. I go back to see my psychiatrist Friday and I guess that I will have bad news, that the Saphris is not going to work for me.

Griffin is staying busy as usual. I don't think that he is going to like having to go back to school on Monday but hopefully he will make the transition within a couple of days. I hope that it's not too hard for him. I am going to miss having him around all day, but I need to get back to my studies since I have hardly worked on anything since he has been home.

I applied to have an extension on my International Relations class and my professor said that she would approve it since I have been going through this med. change and will apparently have to go through more until I find the right one for me. I am supposed to start another class in February and then in March but I shall see how it goes and how much I can handle. If I get the "Disabled student" status then it will help me have more time to get my work done and to submit good quality work and not just something that I had to throw together to meet a deadline.

 I have been sharing the computer and spending a lot of time on facebook but most of my friends are busy, I am sure, and are not on there. Can't wait to calm down! I've done all the cleaning that could possibly be done, now I just wait until I can sit still and not feel like my heart is beating out of my chest.

Manic Depression/Bipolar Disorder and Autism. Is There a Link?

According to a recent study at the Duke University Medical Center, some cases of autism may be associated with a family history of depressive illness. Autism, a disorder marked by social withdrawal and an inability to interact with the environment, seems to appear more frequently in families with a strong history of bipolar illness, the study found.

In connection with his study of 40 autistic children, Duke researcher Dr.Robert DeLong reported in the journal Developmental Medicine and Child Neurology that in 14 of the cases reviewed there was a strong family history of depression or manic depressive illness.

The study hypothesized that when manic depression strikes in early infancy, it may blunt the child's cognitive, social, and emotional development irreversibly, so that the child's brain never develops the framework in which to build communications skills. In extreme cases, this may lead to clinical autism.

(Reprinted from the National DMDA Newsletter, vol. 7, no. 1)

Thursday, December 31, 2009

"Th" Sounds at the Beginning of Words. Happy New Year 2010!



 In the picture Griffin is showing Dot his Boohbah, "Humbah". I don't think that Dot is very interested in the toy or in being held but she has come a long way and actually allows Griffin to hold her without scratching him. She has also become more affectionate now, with me at least. Griffin is still learning how to NOT hold her and to not pull on her legs and tail.

In speech on Tuesday Griffin practiced using his "th" sounds at the beginning of words and it took a lot of effort, but as he went back through it seemed to get easier each time. Now he practices at home with a reward of chips to work towards, which makes it much easier for him in that there is no meltdowns over it.


He also has some degree of difficulty forming the "O" sound in shaping his lips to keep it from sounding like the "ah" sound. One thing at a time, first the "th" because the lack of that sound keeps me from understanding what he is trying to say to me 90% of the time.

I think that I am going to be approved to get an extension on my International Relations class because I am falling behind due to fatigue and needing more sleep because of my new medicine Saphris. It is a new drug, an anti-psychotic mood stabilizer and so far it seems to be working. I am still trying to wean off of the Seroquel and so far there are no side effects from lowering the dose. Got my fingers crossed!

Happy New Year to everyone! I hope that you all have a wonderful, healthy, happy, and safe new year. Please consider staying home instead of being out tonight where all the drunk drivers are. I haven't gone out on New Year's Eve in over a decade simply because of the danger. Gosh, I bet it is closer to two decades come to think of it. Anyhow, I want my special blogging friends to know how much I appreciate your support and those of you who follow our blog......thanks for caring!

I have a great deal to be grateful for and even though 2009 zoomed by, there were lots of changes, mostly good ones, that I am thankful for. It is now Griffin's turn on the computer so I guess that I will write again later.

Love and Hugs to all my dear friends across the globe!

U.S. Autism Prevalence Rises to 1 in 110 Thursday, December 24, 2009 By: Carin Yavorcik CDC Report Highlights Increased Prevalence, Continued Delay in Identification as Critical Public Health Crisis affecting American Families

Bethesda, MD (December 18, 2009) -- The U.S. Centers for Disease Control and Prevention (CDC) released their national autism prevalence report today, confirming that the prevalence of autism spectrum disorders in the United States is 1 percent of the population, or one in 110 of children 8 years of age in 2006.
The long-awaited report was conducted by the CDC’s Autism and Developmental Disabilities Monitoring Network in 11 sites in 2006 and tracks prevalence in children 8 years of age. The Autism and Developmental Disabilities Monitoring (ADDM) Network is a group of programs funded by CDC to determine the number of people with autism spectrum disorders (ASDs) in the United States. The ADDM sites all collect data using the same surveillance methods, which are modeled after CDC’s Metropolitan Atlanta Developmental Disabilities Surveillance Program (MADDSP).
“This report confirms what we at the Autism Society have been saying for years about the prevalence of autism in America and the critical importance of early identification and interventions. For the first time, we are hearing our government acknowledge the real increase in autism and validating the impact this condition has on individuals, families and their communities,” said Lee Grossman, Autism Society President and CEO. “The question still remains: How bad does it have to get before families receive appropriate lifespan services?”
This report presents a number of other important details, including:
  • The study suggests that while better diagnosis accounts for some of the prevalence, a true increase cannot be ruled out. The report also underscores that “efforts are needed to understand how complex genetic and environmental factors interact to result in symptoms which make up the autism spectrum.”
  • The report again highlights that delays in identification still persist. Children in 2006 were being diagnosed only five months earlier on average than those in 2002, thus still missing the critical years of early intervention. (In 2002, children were diagnosed at an average age of 53 – 66 months, and in 2006, the average age was 50 – 60 months.)  The report laudably notes that the continued lag in identification needs to be addressed as a public health concern so that this nation “can ensure that children in the U.S. receive optimal early intervention services.”
  • Increases in prevalence among minority population were significant, with a 91 percent increase in Hispanic children (with 144 percent increase in Arizona contributing to this) and 41 percent in black non-Hispanic. There was a 55 percent increase in White non-Hispanic.
  • Prevalence in boys was found to be 4.5 times higher in males than females. The report states one in 70 boys and one in 315 females have autism. 
  • This study gathered data on prevalence and cognitive impairment, showing a 90 percent increase in children with borderline intellectual functioning and a 72 percent increase among children with average to above average intelligence. As intelligence testing is unstable in the autism community, further analysis needs to be done to understand this change.
  • Overall prevalence was lower among the sites with access to health evaluations alone, so sites that did not include educational evaluations likely underestimated ASD prevalence for that site. The lack of educational data would have impacted the cognitive functioning analysis as well.
It is important to note the ADDM study does not cover adult prevalence or those children who receive diagnoses later than 8, which can be common in the Asperger’s community, where the average age of diagnosis is 11 years old. The ADDM report, which was conducted in the states of Alabama, Arizona, Colorado, Florida, Georgia, Maryland, Missouri, North Carolina, Pennsylvania, South Carolina and Wisconsin, is consistent with the Department of Health and Human Services National Survey of Children’s Health, published last October.

The increasing numbers have long-term economic costs to the country, as autism is a chronic medical condition affecting people across the lifespan. The Autism Society calls on the U.S. government to address the pressing need for community-based services to ensure a better quality of life for people with autism and their families and to increase funding for research into what factors put people at risk and treatments that will mitigate the severest medical symptoms affecting people with this chronic medical condition.

Click here to view CDC study.

Monday, December 28, 2009

Duke University Medical Center; Study Surprise Yields New Target for Assessing Genes Linked to Autism

Researchers at Duke University Medical Center have uncovered a new genetic signature that correlates strongly with autism and which doesn't involve changes to DNA sequence itself, but rather to the way the genes are turned off and on. The finding may suggest new approaches to diagnosis and treatment of autism.

The researchers found higher-than-usual numbers of gene-regulating molecules called methyl groups in a region of the genome that regulates oxytocin receptor expression in people with autism.

"In both blood samples and brain tissue, the methylation status of specific nucleotides in the oxytocin receptor gene is significantly higher in someone with autism, about 70 percent, compared to the control population, where it is about 40 percent,” said co-lead author Simon G. Gregory, PhD, assistant professor in the Duke Department of Medicine. The work appears in BMC Medicine journal online.

Oxytocin is a hormone secreted into the bloodstream from the brain, and also released within the brain, where it has a bearing on social interaction.
Previous studies have shown that giving oxytocin can improve an autistic person’s social engagement behavior and it is being explored as a potential treatment of the disorder. Higher methylation of the oxytocin receptor gene may make a person less sensitive to the hormone.

The findings by Dr. Gregory and his colleagues will potentially provide information about which individuals will respond better to treatment with oxytocin.

"We are excited about our findings because they represent one of the few occasions in which a mechanism other than genetic susceptibility or genome instability is implicated in the development of autism," Gregory said.

"These results provide a possible explanation of why social isolation forms part of the autism spectrum -- because an autistic individual’s ability to respond to oxytocin may be limited," Gregory said. "Oxytocin has been tied to levels of trust and ability to read social cues."

Although the methylation status of the OXTR gene is not a definitive diagnosis of autism by itself, a test for methylation might be used along with other clinical tests for diagnosing autism. Gregory said that methylation-modifying drugs also may be a new avenue for treatments.

Though not a change to the DNA sequence itself, methylation status can be inherited, by what is known as epigenetics -- inherited changes in gene regulation.

“The epigenetic link to autism is extremely exciting as it provides another opportunity for us to explore the heritability of this disorder and argues the importance of exploring epigenetic markers in complex disease,” said co-lead author Jessica J. Connelly, PhD, assistant professor in the Department of Medicine at the University of Virginia.

The identification of differences in methylation status of OXTR in people with and without autism was discovered through a genome-wide study of genomic instability.

The researchers examined 119 individuals with autism to identify genomic rearrangements. One of these individuals had a DNA deletion of a region containing the OXTR gene.
The group then examined the genomic make-up of the individual’s family members and established that the boy with the deletion had a brother with autism who didn’t have the deletion. (Their mother had symptoms of an obsessive-compulsive disorder, but not autism; autism and OCD share the symptom of intensely repetitive thoughts and behaviors).

The researchers examined the brother’s genome and found instances of elevated methylation. With this discovery, they looked again at independent collections of blood samples and brain tissue from a repository of specimens, and found consistent differences in OXTR methylation.

This research was supported by the JP Hussman Foundation and National Institutes of Health grants.

Other authors include co-lead-author Jessica J. Connelly, now with the University of Virginia and formerly of the Duke Center for Human Genetics; Aaron Towers, J. Johnson, D Biscocho, and Christina Markunas of the Duke Center for Human Genetics; G.R. Delong of the Duke Department of Medicine; S.K. Murphy of the Duke Departments of Obstetrics and Gynecology, and Pathology; Carla Lintas and Antonio. Persico of the Laboratory of Molecular Psychiatry and Neurogenetics, University Campus Bio-Medico, and the Department of Experimental Neurosciences, IRCCS “Fondazione Santa Lucia”, both in Rome; R.K. Abramson and H.H. Wright of the Department of Neuropsychiatry, SOM-USC in Columbia, S.C.; P. Ellis and C.F. Langford of Wellcome Trust Sanger Institute in Hinxton, U.K.; and Michael L. Cuccaro and Margaret A. Pericak-Vance of the John P. Hussman Institute for Human Genomics of the University of Miami Miller School of Medicine in Miami, Fla.

Sunday, December 27, 2009

U.S. Senate Passes Health Care Reform Bill Containing Provision For Autism Insurance Reform and Cures Acceleration Network

Washington, DC (December 25, 2009) – Autism Speaks, the nation’s largest autism science and advocacy organization, applauds the members of the U.S. Senate for yesterday passing an overall health care reform bill that contains provisions for autism insurance reform, as well as the funding to accelerate the scientific discovery of autism treatments and cures.

The provision for autism insurance reform was introduced in September by Senator Robert Menendez and passed by the Senate Finance Committee with the support of Committee Chairman Max Baucus. The provision will prohibit discrimination in benefits against people with autism by including behavioral health treatments as part of the essential benefits package.

The bill also included elements of the Cures Acceleration Network (CAN) Act, introduced in April by Senator Arlen Specter . Like the CAN Act, this provision of the health care reform bill would create a large new fund for, and focus on, "bench to bedside" research, creating an emphasis on more quickly translating research discoveries into practical medical applications. Autism Speaks was the first disease advocacy group to support the CAN Act.

“We are grateful to Senators Menendez, Baucus, Specter, and their Senate colleagues for passing this health care reform bill, ensuring that families dealing with autism are a part of larger health care reform,” said Peter Bell, Autism Speaks executive vice president for programs and services. “Now that the Centers for Disease Control and Prevention has confirmed that autism affects one percent of American children, the need for our legislators to ensure that families can afford the treatments their children need, as well as a redoubling of our federal government’s commitment to science and innovation in the search for a cure, has never been more important.”

“The addition of the Cures Acceleration Network to the health care reform legislation will create the urgency we desperately need at the federal level to push science toward real impact on people’s lives,” said Geraldine Dawson, PhD, Autism Speaks Chief Science Officer. “In the area of autism research, in particular, much needs to be done to translate important discoveries into treatments and therapies that can help individuals living with autism today.”

The Senate and House versions of the health care reform bills must now be reconciled and approved by both bodies before presented to President Obama for his signature.

December 2005 - Severe Depression & Hospitalization


Four years ago our lives were so different and even though I was grateful for all that was in my life, namely Griffin, I was in severe depression. I ended up having to go to the hospital because I needed my meds changed and it was the first time I was separated from Griffin. It hurt so bad, I thought that I was going to die from heartache. We were apart for a week and all I did was cry. I talked to him on the phone and here you can see that he fell asleep listening to me tell him "I love you" over and over again.

Strangely enough, this year was my second hospitalization (September) but it was for severe mania instead. It was still very painful and this time was different for Griffin. This time he knew more about what was going on and it bothered him tremendously. He had a delayed reaction of about a week or two and cried almost uncontrollably. It took him a few times to try to explain what he was feeling but it came out..."Mommy, I missed you when you were in the hospital". I explained to him that mommy was sick and had to be there but that mommy missed him too and didn't like being away from him. He accepted that answer and seemed to understand.

We have come a very long way and I love him more and more with each passing day. I am now stable on my bipolar meds but will be changing them again soon. I just hope that I continue to remain stable to ensure our quality of life.

My Very First Post; A Lot Has Changed but Much Has Stayed the Same

Saturday, September 17, 2005

Dealing with Autism

Griffin was diagnosed when he was 18 months however, I had noticed at around 15 months that something was not right when he wouldn't respond when his name was called. I immediately had him evaluated by the Program for Infants and Children and we started occupational therapy and other early intervention strategies. As a matter of fact, I attribute Griffin's success and growth to that early intervention. I don't believe that he would have come as far as he has had we not started working with him so soon. Griffin is now pretty high functioning and very intelligent. He is doing some things that a typical 6 year old might be doing like reading, counting, he recognizes and names all his shapes, colors and a multitude of animals. Now that Griffin is in preschool and has a regular routine he has been sleeping much better; before school he had to take Melatonin to help him sleep. I think that the routine helps in many ways because his tantrums have nearly stopped completely and he has been eating a greater variety of foods as well. Although Griffin is a big fan of watching videos and probably watches more than his share I believe that they have helped him to develop his vocabulary not to mention watching him dance and sing is quite entertaining. Abby is Griffin's service dog, she helps him with his sensory issues when we go out in public and he interacts with her at home which has helped them to create a bond with one another. I got her because when Griffin was around 2 years old my friend had brought over her dog and we noticed that while the dog was there Griffin had no self-injurious behaviors and ever since he has had no problems out in public or at home with sensory issues. Abby doesn't even do anything actually just her presence has an effect on Griffin. She is a patient and tolerant wonderful gift in our lives and I got her from the animal shelter she's not even professionally trained. In Alaska service dogs are not required to be professionally trained. I have been a pro-active parent and searched out all the resources available to Griffin. So, he is now getting speech therapy and occupational therapy at school as well as with private therapists. Recently Griffin has shown signs of interacting with his peers which I am absolutely thrilled with of course. It is such a thrill to watch him grow each day and become more and more independent. This is what I wish for my beautiful child to become an independent adult who can function in society as well as his non autistic peers. I wish for him that he learns to fear danger and be aware of his surroundings so that he can live safely and not wander off as so many autistic children and adults tend to do. Whatever Griffin is now and whatever he does ultimately become he will always be my perfect little guy. Because, you see, Griffin's autism to me is not a curse nor a problem, I see it as just what has happened, unfortunately, and as much as I try to help him to overcome it I will never believe that my son is "abnormal'. He is simply Griffin and I love him exactly the way he is! I accept the autism as something that may never go away. But, Iam also hopeful that the treatments and therapies that have helped him will continue to help him and there is a distinct possiblilty that he will mainstream by kindergarten and more so with each passing year.

Friday, December 25, 2009

Bipolar Feels Just Like Fibromyalgia

I finally got in touch with the on-call doctor today and figured out that I should change the dosage of my bipolar med. Apparently, since I started weaning off of the Seroquel I have had symptoms that mimic the symptoms of the Fibro. I went from taking only 400mg back up to 800mg. It is past the usual time that my symptoms occur so I guess that that was the whole problem. I guess that the chemicals in my brain were so screwed up that it was effecting my entire body.

I am still going to go see my psych. doc ASAP to switch from the Seroquel (which causes me to retain weight) to a new drug that is weight neutral. I have been on Seroquel for many many years and just found out that it was keeping me from losing weight no matter how little I ate or how much I had exercised.

Griffin and I are having a mellow day, just hanging out. We share the computer, which has worked just fine and when not on the computer we stay busy otherwise. We have been alone together for so many years that we are used to it. The days of drama and excitement are long gone.......thank goodness. Mellow and laid back is the way to go!

Thursday, December 24, 2009

Fibromyalgia is NOT better and enter STRESS on top of it!

Last night I did something that I wasn't supposed to do but I was left without a choice. All the doctor's offices were closed and at 5:00 sharp my fibro flared up horribly. It rendered me helpless and utterly useless. All I could do was to lie down on the couch. So I made the decision to take an additional Provigil when I am only supposed to take two a day. It took about 30 minutes but when it took effect I was feeling so much better and able to move around. I had to do something, I had to take care of Griffin.

I expected to be up all night, as Provigil is used for energy, but I took my night meds and 1 1/2 Attivan and got sleepy around 10:00. My psych doc doesn't want me to take Attivan on a regular basis because it is a benzodiazapine and one can build up a tolerance to it and ultimately get addicted to it. I am nowhere near that but until I can see my psych doc again I am just going to have to make the best of it. I have to function and when I get stressed over Griffin having meltdowns it only makes things worse. I have nobody to watch Griffin for me to give me a break so I just have to do the best that I can.

When we were in Alaska I had little/sporatic support and we were very isolated and now I am feeling that way again. We moved here to be near friends and family but when it comes down to it....there is nobody to help. Autism + bipolar +ADHD mixed in with bipolar + fibromyalgia = a lot of stress! For both of us!

It is nice when I get to sit here and write, sometimes I get on Facebook and communicate with my friends, but I have to share the computer with Griffin because he needs to have something to do too, so I have spare time and no money to go anywhere and it is just not a lot of fun. To put it mildly. He is out of school until Jan. 4th so I hope that we can manage until then. Sometimes my patience is not up-to-par so I just have to back off and try to maintain my sanity.

Wednesday, December 23, 2009

Fibromyalgia = Lots of Pain & Horrible Fatigue

Since I am Bipolar it has been recommended by my psychiatrist that I do not take Cymbalta for my Fibromyalgia because it can make me manic. When I did take Cymbalta it helped me get through the day with few symptoms and I think that it helped me to sleep a bit better as well. My Fibro. symptoms are getting out-of-hand, the bottoms of my feet hurt so bad that I can barely stand to walk on them. The rheumatologist just increased my Mobic and I guess that is all that can be done about it. I take Provigil which gives me energy during the day but when it wears off in the evening I am in so much pain and every single movement I make is such an effort because I am DEAD tired! I feel as though I have been pummeled to near death. The cause of Fibromyalgia is unknown but I have been told by one of my rheumatologists that it has to do with circulation of blood and the only treatments known to be effective is Cymbalta, Lyrica, and acupuncture. It affects more women than men....why? They don't know but it is known that it can worsen and in some cases turn into more serious rheumatological diseases. It affects all the muscle tissue and bones but generally not the joints. But since I have arthritis too from years of abusing my body, when I was a dancer, then that is thrown into the mix. However, the arthritis is hardly a problem by comparison.

The only way that I can convey how it feels to someone who doesn't have it, is that it feels similar to when you have a really bad case of the flu and your entire body hurts all over and you just don't want to move. I am nearing the point to where I beg my doctor to let me try the Cymbalta again and if I become manic then we can stop it but something has got to change! I wish that I could afford acupuncture because I am sure that it would help but can't do that now. It would be great if I could afford to go to the YMCA or the local swim center because exercise would help a lot and it would help me lose weight but even with the scholarship I can't afford it. Swimming is all I can do because of my feet hurting so bad. I used to weight train for years and I loved it, wish that I could do that again.

I do have some good news though; I tried Griffin on Melatonin again (he used to take it when he was 2-4 years old) and it is working! So I am taking him off of the Remeron (Mirtazapine) which I am thrilled about, especially since he sleeps all through the night. His prescribing NP wasn't happy that he was on the Remeron when we first went to visit her so now she will be happy to know that he is off of it. I still need to get Griffin's blood drawn for his glucose test but I keep forgetting when we go out.

Monday, December 21, 2009

Do Vaccines Explain the Surge in Autism

To the parents of autistic children and to parents of children who have not been vaccinated:

I realize that this is still, to this day, a hot topic, but please open your mind a bit and take this information into consideration. My sister has not vaccinated her 5 year old child and it scares me to think of her being exposed to whooping cough or measles, which could potentially kill her. It is a very serious issue and to me, the evidence is clear that the rate of autism in the UK still rose even among the un-vaccinated children. Griffin is up-to-date on all his vaccines, even the H1N1, and he never gets sick...whereas my sister's child is always sick. I do not regret giving him all his vaccines, including the MMR because I think that mental illness (ie...his genes) has more to do with the autism than his environment. Please read this article written by Dr. Jeffrey P. Baker:





During office visits when its time for an immunization shot, parents frequently ask me whether vaccines cause autism.
It is a highly charged discussion, involving great emotion for many parents.
Jeffrey P. Baker, MD, PhD, director of Duke's History of Medicine Program and an associate clinical professor of pediatrics, discusses the evidence.
--Dennis Clements, MD, PhD

 
The annals of medicine are full of stories about scientists who stubbornly cling to a “great idea” despite evidence to the contrary. The history of autism provides a classic example.
From the 1940s through at least the 1960s, autism was widely viewed as a psychiatric condition, typically attributed to highly educated mothers lacking the capacity to provide warmth or affection for their infants. The so-called “refrigerator mother” theory turned out to be based on little reality beyond the imaginations of its originators. It survived as long as it did because it promised (falsely, as it turned out) the possibility of cure through psychotherapy.
Today, another hypothesis has captured the imagination of many parents in the autism community. It is the conviction that vaccines are responsible for the dramatic rise in the disorder’s visibility over the past 20 years. Despite the failure of 10 years of scientific study to provide support, this belief remains powerful among parents’ groups and the internet. Why?
Although the cause of autism remains unknown, the vast majority of researchers believe that genetics play a central role. Siblings of children with autism have a 2 to 7 percent chance of the disorder, at least 50 times the rate of the general population. The concordance rate is higher for fraternal (5-10 percent) and highest of all for identical twins (60-90 percent).
Other studies have found a higher family risk of problems in communication, social relations, and anxiety, suggesting that a broader form of the disorder may be inherited that presents as classical autism only in its most severe form. Collectively, this research underlines that genetics likely represents the most critical factor leading to autism. The question is whether an environmental trigger may play a secondary role in genetically-predisposed children.
If autism is largely genetic, why has it seemingly become “epidemic” in recent years?  There is no doubt that the disorder is diagnosed far more commonly (by a factor of at least 10) today than was the case 20 years ago. It is equally clear that its definition has been expanded tremendously, encompassing both higher functioning children (such as those with Asperger’s syndrome) and others who one would have been diagnosed with mental retardation.
At the same time, there has been a great push for physicians and schools to identify autism at earlier ages and with milder presentations. Many experts in the field believe that the rise of autism reflects the success of early intervention and school-based programs to heighten awareness of the disorder. Still, the possible role of an environmental exposure cannot be eliminated. And of the hundreds of agents to which pregnant women or infants are exposed, none are quite as visible as vaccines.
Activists in the last 10 years have promoted two particular theories linking immunizations and autism. One concerns the MMR vaccine against measles, mumps, and rubella. It became controversial in Great Britain following the publication in 1998 of a case report by Dr. Andrew Wakefield describing several children who developed signs of diarrhea and autistic regression following this vaccine. MMR immunization rates fell in the U.K., and outbreaks of measles followed.
The other hypothesis, originating in the U.S., concerns the preservative thimerosal, which was removed from infant vaccines between 1999 and 2001 as part of broader public health efforts to reduce infant exposure to environmental mercury.
These two theories are not easily reconciled. Parents blaming the MMR typically described infants who were normal prior to this particular vaccine; thimerosal/autism narratives told of infants who developed autism after any vaccine combination.
British parents often noted the correlation between the rise of autism and the use of the MMR, introduced in 1987 and the focus of national immunization drives in the early 1990s. The fact that MMR had been used widely in the U.S. since 1971, long before talk of an autism epidemic, was generally ignored.
Both hypotheses have been subjected an extraordinary amount of study in large populations. Comprehensive reviews by expert panels, most notably the U.S. Institute of Medicine, have concluded that the evidence simply does not support either vaccine/autism hypothesis.
In Britain, 10 of the 12 co-authors of Dr. Wakefield’s 1998 report have disavowed its conclusion regarding MMR. Wakefield himself is under investigation for serious professional misconduct for not having revealed his relationship to anti-MMR litigation groups when submitting his article to The Lancet. In the U.S., data published in 2008 from the state of California showed that the elimination of thimerosal from all routine infant vaccines in 2001 had no effect slowing down the rise of autism, despite many predictions to the contrary.
Among mainstream health researchers, the MMR and thimerosal autism hypotheses are in tatters. Yet like the hydra of ancient mythology that grew two heads whenever one was severed, the belief in a vaccine/autism connection continues to survive by taking new forms. Some activists are focusing on other vaccine additives, such as the aluminum salts used to boost the immune response.
Others are arguing that giving too many vaccines somehow overwhelms the child’s immune system. This was the question at the heart of the Federal Vaccine Court’s decision to award damages to Hannah Poling, a girl with a mitochondrial disease (a very uncommon disorder disrupting her ability to process nutrients) who regressed developmentally and developed signs of autism after receiving several vaccines at age 19 months.
Cases such as Hannah’s are tragic, but raise more questions than they answer. There are in fact rare children with silent metabolic disorders who may develop normally until suddenly regressing after the stress of a childhood infection. Whether vaccines are a risk has not been proven. Certainly, the infections that vaccines prevent do constitute a danger for these children. Even if we could identify at-risk children, it is far from clear that holding or splitting vaccines would do them a service.
Before accepting the “multiple vaccine” hypothesis, it is worth remembering that more vaccines does not mean more stress on the immune system. The 14 vaccines given to young children expose them to a total of about 150 immunological units, or antigens.  The MMR, for all the ballyhoo, contains only 24. In contrast, the old smallpox vaccine included 200 proteins, and the whole cell pertussis vaccine used before the 1990s contained 3,000.
In a nutshell, while more vaccines are being given to infants, these vaccines are far more targeted and purified than was the case twenty years ago. This is why giving vaccines separately makes so little sense to the scientific community. Splitting vaccines certainly makes the schedule even more complicated, and will likely lead to lower immunization rates. When these rates fall below a certain threshold in a community, outbreaks become possible. This has already happened with respect to whooping cough and measles in various locations in the United States.
It will always be possible to think of new mechanisms linking vaccines and autism as others are disproven. But after 10 years of extensive research on vaccines, it is time to entertain other ideas regarding environmental exposures. Vaccine opponents consistently disparage the positive benefits of vaccines, which the vast majority of physicians and public health leaders regard as one of our most powerful tools to protect the health of our children. Deferring or declining vaccines has consequences for our neighbors’ children as well as our own. It is important to learn about the diseases they prevent prior to questioning their benefits.
-- Jeffrey P. Baker, MD, PhD, is director of Duke's History of Medicine Program and an associate clinical professor of pediatrics.
-- Dennis Clements, MD, PhD, is the chief of primary care pediatrics at Duke Children's Hospital.

We Found "Dot"!!!!!

I was in the bedroom getting dressed and heard a faint meow. We looked and looked everywhere in there.... I searched in the closet and felt a warm spot in a blanket there. Sure enough, there she was tangled up inside the blanket and couldn't get out. HA HA HA! Griffin smiled so big when he held her and he is still laughing about it. Boy, are we ever glad to have our beloved friend back!!!!!!