Single Moms Raising Autistic Sons


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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!!!!!!

Our Dear and Precious Kitty, Dot is Gone


Last night Griffin opened the door for just a few seconds and I guess that is how Dot got out of the apartment. I didn't notice until this morning when we were getting ready to take Abby for a walk. It is the absolute worst time of the year for her to be out there...it was only 16 degrees this morning so of course I am worried about her. Griffin isn't upset, I guess that is just part of being autistic, just as when the hamster died he wasn't upset.  I thought that he had a strong bond with the cat but I guess not. She was a great kitty for us and even for Abby because they played together all the time. Now, I have to wait to get another one because getting one from the shelter is expensive and I won't do it any other way. Rescuing animals is the only way to go as far as I am concerned. You save their life and they are eternally grateful and one can always know that they did the right thing by saving a life.

It is supposed to be in the 40s today so I hope that she will be okay....maybe she found a new home, although she won't let people pick her up so I don't know how that will work. We love you KittyDot.com wherever you are!!!!!

Friday, December 18, 2009

Griffin Plays in the Snow

For the very first time ever, Griffin played in the snow several times today when we took Abby for a walk. He lived in Alaska for 5 years and never wanted to play in it but now he loves it! He even played snowball fight with the other boys outside, which I am thrilled about. Over and over he kept lying down in the snow and just adored the feeling of the wet snow. We will go out a couple more times today to walk Abby but now that the temperature is dropping we won't be staying out there so long. Thank goodness I got his snow boots early this year, I already had some really good ones from Alaska for me. None of the kids had snow boots on and all of the adults out there walking had no boots either. Guess we are going to win the award for the most prepared in the neighborhood (hee hee).

The big difference between Alaska and here is that there is nice dry powdery snow in Alaska and here it is completely wet. So, one cannot play outside for long here and not get cold-to-the-bone. Abby doesn't seem to mind, she still keeps smelling around for something, she loves to sniff...she would have been an awesome drug dog. I am a nerd outside with the umbrella over my head. Hey, I am a creature of comfort and don't like getting all wet and cold...guess I am just an old lady.

Griffin has been really active indoors as well. He has been dancing around to the music he finds on the internet. He has found some really good music with videos of cartoons that are in foreign languages and he has the words memorized! I start dancing too and he tells me to stop, guess he is embarrassed that his mommy likes to dance too...that's just not cool I suppose. I have been sharing the computer with him and trying to work on this paper for my international relations class and I am finally making some headway. It is due on Sunday so it's a good thing I am getting somewhere.

Thursday, December 17, 2009

Schedules, A Timer, and Lots of TLC

We went to the Behavioral Specialist and what a relief to know that there is an easy solution to "Homework Hell". He explained that the best way to deal with meltdowns is to avoid them...well, I kinda knew that...but the way to avoid it is easier than I had thought. He said to make a schedule that applies each and every day, put it on the wall and stick to it. Then for homework, to sit with Griffin and make a separate schedule that applies to that moment for example, to do five sentences and then take a 10 minute break....then do the math and take a break, and finally do the reading and talk about it. Then it is time to get on the computer and have some more down time. Oh, and I forgot to put first that he has an hour of down time as soon as he gets home from school but that doesn't include computer time. He has to wait for that as an incentive to finish up the homework first...then there is the reward. After all that there is time to eat, take Abby for a walk, take a bath, and at 8:00 it is bedtime. He has been going to bed with no problem even if he is not sleepy right away, he will lie there and do some imagining then nod off.

I went to the rheumatologist Monday and he ordered some labs because my feet have been hurting me for over a year now and I had thought that it was gout but he said it wasn't. Then he told me that it might be rheumatoid arthritis and I was not happy to hear that, especially after I got home and did some research on it. I am hoping that it is something minor although he prescribed Mobic and it is not helping at all. It does help my Fibromyalgia along with the Provigil that I take which gives me the energy to get through the day.

Today I went to see my psychiatrist who is still just as awesome as the first visit. I am taking Rozerum which is pure Melatonin, he told me, and if I take 16 mg. then I sleep very well so that is a huge relief. I am slowly weaning off of the Seroquel, which causes weight gain/retention, and I am excited about finally get off of it after many many years.

I am having a hard time with my political science international relations class and am struggling with a paper that is due by Sunday but I am doing great in my English 101 class which will be over on the 27th. I love writing papers/essays but not so much when I don't understand the topic very well. My paper is on liberalism and realism and I can't even figure out how to write a thesis statement on two topics, never done that before. I can ace papers written on one topic, in fact I finished my essay on the effects of global warming in one day. Hey, if anyone has any helpful advice I sure could use it!

Thursday, December 10, 2009

"My Wish" Performed by Rascal Flatts. Dedicated to Griffin




I hope the days come easy and the moments pass slow
And each road leads you where you want to go
And if you're faced with a choice
and you have to choose
I hope you choose the one that means the most to you
And if one door opens to another door closed
I hope you keep on walkin' 'til you
find the window
If it's cold outside, show the world
the warmth of your smile
But more than anything,
more than anything

My wish for you
is that this life becomes all that
you want it to
Your dreams stay big, your worries
stay small
You never have to carry more
than you can hold
And while you're out there gettin'
where you're gettin' to
I hope you know somebody loves you
And wants the same things too
Yeah, this is my wish

I hope you never look back but you
never forget
All the ones who love you
And the place you left
I hope you always forgive and you
never regret
And you help somebody every
chance you get
Oh, you find God's grace in
every mistake
And always give more than you take

This song has really touched me because since the first time that I heard it, I knew that it is exactly what I wish for Griffin as he gets older. One day I will reflect and still say, "Yeah, Griffin, this is what your mother wishes for you and may all your dreams come true. May you follow your path and always feel grateful for all of your blessings."

I once wrote poetry and was not too bad at it but ever since taking medication, it has zapped a great deal of my creativity. Thank goodness I am still good or even better at writing than I once was, prose....that is. Speaking of, I have got to get back to my work for my International Relations class. It is far more fascinating than I thought that it would be. I have learned a lot.

Saturday, December 05, 2009

Never Say That a Service Dog Cannot Enter

A couple of weeks ago Griffin, Abby, and I went into the dentist's office just as we all go into any other establishment or medical office, and the minute that we entered the receptionist loudly exclaimed, " You can't have that dog in here! There are children that are allergic to dogs!" THAT was the WRONG thing to say! Abby is allowed, as a service dog, to enter and remain anywhere and everywhere that Griffin goes. She immediately goes to tell the doctor and he comes out and ushers us back to a room with just chairs in it. Then he proceeds to tell us that he had the same problem before with a service dog and called the Dental Assoc. and they told him that the dog was not allowed back into the clinic area. BS!!!!!!!!!!!!!! And there is NO way that the receptionist could know about whether a child is allergic to animals, not that it mattered anyhow, because I filled out the same paperwork which does not ask if the child is allergic to anything other than drugs!

For sure he was lying because it is clear all across the nation that service animals are allowed, as I stated, everywhere that the disabled person goes. Being Bipolar and one who gets anxiety very easily, I told him that he was wrong and that I would put Abby in the car but I was not going to let this situation go. As I expected, Griffin would not let them clean his teeth and he was clearly very upset and uncomfortable. So, all they did was brush his teeth with a frickin toothbrush!

When I got home I immediately called the Disability Law Center and made a report. She e-mailed me a flyer that I printed and took to the dentist's office the very next day with Abby in tow. The flyer states clearly that there are little to no exceptions to the rule of where a service animal can go. And if any of you would like a copy of that flyer then just let me know and I will gladly e-mail it to you. Or you can just go to their website and let them know that you would like one.

Anyhow, I made sure that everyone in the office could hear me when I exclaimed that the receptionist was WRONG and that the doctor was WRONG and that I expected to talk to him before the day was through. Needless-to-say, they were speechless and hopefully they were embarrassed as well. Because ignorance is no excuse just as with any other law in the United States!

The doctor called me and thanked me for letting him know but as soon as I told him that he would be hearing from the lawyers at the Disability Law Center he shut up and wanted to get off of the phone. Well, looks like maybe it sunk in a bit (?) Yesterday, the lawyer called me and asked me all of the details and I added that now Griffin thinks that Abby is not allowed anywhere that we go all because of what that doctor did...he nearly has a meltdown. She is sending me the papers that will allow her to speak to the doctor and whomever else that she needs to.

The Disability Law Center has come through for us before in Alaska when in the United States Post Office they wouldn't allow Abby and in a grocery store as well. They truly put the fear of the powers that be into these people and they straighten up very quickly. I am glad that in this state that the lawyers are obligated to look into each and every case that is reported. She also told me that it would be pursed as though we wanted to return to the office and I admitted that yes, we did. I do want to go back to that office because it is the only one within at least 30 miles that will allow the parent to go back with the child. So like it or not....they will see us again....with Abby right beside Griffin!!!!!

Friday, December 04, 2009

The Best Doctor in the Whole World!

For months, since July actually, I have been in search of a psychiatrist to manage my meds for me. It wasn't until yesterday that I had found one, and after I left his office I had this feeling of euphoria because of what he said/did in only an hour's time. I have never had a doctor be so thorough and sit there and go through all the psyche meds known to man just so that he could figure out what would work best for me.

I have not be quite as stable as I wish that I could be and having been on Seroquel for so many years has taken its toll on me.....causing me to gain weight and not being able to lose any. Seroquel is infamous for this and no other doctor cared enough or listened to me when I told them that I desperately wanted to lose weight.

So the doctor made a deal with me, that I was to do my part and eat regular healthy meals and exercise 30 minutes a day and that we would work together on this. I almost started to cry because it really felt like he genuinely cared about me. Ever since I was diagnosed in 2004, no doctor has shown much empathy for me. In fact, one doctor put me on Risperdol and it made me eat in my sleep.....everything except the paint off of the walls! And my weight ballooned significantly and he didn't care at all about it.

Before I was diagnosed and started on all kinds of drugs, I was lean and in excellent shape (130 lbs. solid muscle) but I would settle for about 150 lbs. The doctor said that that would be a good healthy weight for me. I am so excited because I just know that it is going to be so much better now that my meds are changing. And if this change doesn't help then in 2 weeks I will see him again and he will try something else. Most doctors won't see their patients again so soon, usually it is at least a month out or even two months. I am just so grateful for this doctor, and an added bonus is that he is quite handsome....hee hee!

Griffin and I went to see the PA for meds yesterday. She wasn't too keen on the idea of keeping Griffin on Remeron and Abilify but they work so well she couldn't contest it. She told me that they prescribe Clonidine instead and that if he were to wake up in the middle of the night then I would give him another dose. I can't do that! I am on sleep meds myself and have to sleep through the night and probably wouldn't even wake up if he did. He would quietly go to the computer and I wouldn't even know it. So I told her that he needs to stay on these meds so that he will sleep all night. She wants me to get some bloodwork done to check his sugar levels because of the Abilify.....boy is that ever going to be a fun time!

Later on yesterday, we went to see the behavioral psychologist and it was great because I had such good news to report. Everything that he had suggested to do has helped exponentially. We are using a timer for all activities and it works like a charm. I use a schedule for him and I let him know way ahead of time that it is bath night or homework is in an hour, or bedtime is in an hour etc... He does best when I let him know ahead of time and especially if something is going to change from the regular routine.

Wednesday, December 02, 2009

How Do You Let Go?

Please someone tell me that you are having the same quandary as I am. How do you let go? How do you encourage your child to be independent and cut the apron strings? Is it because it is just the two of us? It just breaks my heart when he lets go of me and it brings me to tears when I think about how fast he is growing up. He will be 8 years old next month!

Griffin is asking me again, after a long break, to snuggle with him and he still crawls into my bed and I don't discourage him............should I? Am I being to clingy with him? I don't want to screw up my child psychologically and set him up for relationship issues when he gets older.

He is just such an angel and so precious it is so hard and it seems to get harder each year, heck...each day for that matter. If anyone has some support or comments I welcome them because I am having a really difficult time.

Wednesday, November 25, 2009

Feel Free to Copy and Pass Along for an Autistic Individual During the Holidays

This was written for the purpose of it being sent to relatives, friends, and hosts of holiday gatherings that might need a crash course in what to expect from their guest on the autism spectrum. This letter is written as if the individual on the autism spectrum is writing it personally.


Dear Family and Friends:

I understand that we will be visiting each other for the holidays this year! Sometimes these visits can be very hard for me, but here is some information that might help our visit to be more successful. As you probably know, a hidden disability called autism, or what some people refer to as a Pervasive Developmental Disorder (PDD), challenges me. Autism/PDD is a neurodevelopment disorder, which makes it hard for me to understand the environment around me. I have barriers in my brain that you can't see, but which make it difficult for me to adapt to my surroundings.

Thanksgiving & Christmas is one of the roughest holidays for me. With large crowds and holiday shopping it can be very overwhelming, even a bit scary. When planning a party remember that with my over sensitive hearing and eye sight, Christmas trees and holiday smells can cause me mild to severe pain or discomfort. If the noises are impossible to control a personal stereo with headphones set to a safe level for children may help drown out background noise and ease my discomfort.

Sometimes I may seem rude and abrupt, but it is only that because I have to try so hard to understand people and at the same time, make myself understood. People with autism have different abilities: some may not speak, some write beautiful poetry, others are whizzes in math (Albert Einstein was thought to be autistic), or may have difficulty making friends. We are all different and need various degrees of support.

Sometimes when I am touched unexpectedly, it might feel painful and make me want to run away. I get easily frustrated too. Being with lots of other people is like standing next to a moving freight train and trying to decide how and when to jump aboard. I feel frightened and confused a lot of the time. This is why I need to have things the same as much as possible. Once I learn how things happen, I can get by OK. But if something, anything, changes, then I have to relearn the situation all over again! It is very hard.

When you try to talk to me, I often can't understand what you say because there is a lot of distraction around. I have to concentrate very hard to hear and
understand one thing at a time. You might think I am ignoring you-I am not. Rather, I am hearing everything and not knowing what is most important to respond to.
Holidays are exceptionally hard because there are so many different people, places, and things going on that are out of my ordinary realm. This may be fun and adventurous for most people, but for me, it's very hard work and can be extremely stressful. I often have to get away from all the commotion to calm down. It would be great if you had a private place set up to where I could retreat.

If I cannot sit at the meal table, do not think I am misbehaving or that my parents have no control over me. Sitting in one place for even five minutes is often impossible for me. I feel so antsy and overwhelmed by all the smells, sounds, and people--I just have to get up and move about. Please don't hold up your meal for me--go on without me, and my parents will handle the situation the best way they know how.

Eating in general is hard for me. If you understand that autism is a sensory processing disorder, it's no wonder eating is a problem! Think of all the senses involved with eating. Sight, smell, taste, touch, AND all the complicated mechanics that are involved. Chewing and swallowing is something that a lot of people with autism have trouble with. I am not being picky-I literally cannot eat certain foods as my sensory system and/or oral motor coordination is impaired. Don't be disappointed if Mom hasn't dressed me in starch and bows. It's because she knows how much stiff and frilly clothes can drive me buggy! I have to feel comfortable in my clothes or I will just be miserable. When I go to someone else's house, I may appear bossy and controlling. In a sense, I am being controlling, because that is how I try to fit into the world around me (which is so hard to figure out!) Things have to be done in a way I am familiar with or else I might get confused and frustrated. It doesn't mean you have to change the way you are doing things—just please be patient with me, and understanding of how I have to cope. Mom and Dad have no control over how my autism makes me feel inside.

People with autism often have little things that they do to help themselves
feel more comfortable. The grown ups call it "self regulation," or "stimming'. I might rock, hum, flick my fingers, or any number of different things. I am not trying to be disruptive or weird. Again, I am doing what I have to do for my brain to adapt to your world. Sometimes I cannot stop myself from talking, singing, or doing an activity I enjoy. The grown-ups call this "perseverating" which is kind-a-like self-regulation or stimming. I do this only because I have found something to occupy myself that makes me feel comfortable. Perseverative behaviors are good to a certain degree because they help me calm down.

Please be respectful to my Mom and Dad if they let me "stim" for a while, as they know me best and what helps to calm me. Remember that my Mom and Dad have to watch me much more closely than the average child. This is for my own safety, and preservation of your possessions. It hurts my parents' feelings to be criticized for being over protective, or condemned for not watching me close enough. They are human and have been given an assignment intended for saints. My parents are good people and need your support.

Holidays are filled with sights, sounds, and smells. The average household is turned into a busy, frantic, festive place. Remember that this may be fun for you, but it's very hard work for me to conform. If I fall apart or act out in a way that you consider socially inappropriate, please remember that I don't possess the neurological system that is required to follow some social rules. I am a unique person—an interesting person. I will find my place at this celebration that is comfortable for us all, as long as you'll try to view the world through my eyes!

*Author, Viki Gayhardt

Sunday, November 22, 2009

A Very Mellow Weekend


We had such a wonderful weekend. It was so mellow and quiet. Griffin spent most of his time making things out of legos, such as pictured here: the Simpsons. I think that he did a great job! I got lots of school work done, started my final exam for my history class. It will take a few days to complete but I think that if I am careful enough I can make a really good grade.
I was formaly invited to join the honour society of the university that I attend (online) because I have made straight A's so far and hope to continue along that path. I am certainly putting lots of hard work into my classes so I have my fingers crossed.
I must add that I am grateful for our health because just about everybody that I know is sick. I am very strict about both of us washing our hands as soon as we get into the apartment, I think that it helps prevent a lot of sickness. Griffin is pretty much over putting his fingers in his nose or in his mouth so that helps too. Since he was born, there are only a handful of times that he has actually gotten sick and each time did not last very long. And he has never taken antibiotics either, simply because he would always vomit as soon as he felt them in his mouth....and yes, even the liquid kind. So we have always been blessed with good health and boy does that make life a lot easier.
We have finally gotten an amazing case manager who is getting things done and is on the war path to get the darn IEP meeting that I have practically been begging for since the first day of school......uhm, since August!!!!! I have spoken to everyone that I need to but they keep coming up with excuses and blowing me off each time I bring it up. Tracie is our champion and she is definitely going to come through for us!
I am still searching for a psychiatrist who accepts medicare and/or medicaid but have had no luck in this area. So, I am looking further away into the next town....there's bound to be at least one somewhere. I've got to find one soon because I need help managing my meds and besides, I am about to run out of some of them. I do have a great therapist but the clinicians that they have there I am not happy with. For the most part I have been pretty stable but I have had to take an anxiety pill a few times to help me out.
Please pray for my dearest friend, Tina who has been very ill. We have known her and her family for a very long time and expect that she/they will be with us for many years to come. But please take time to think of them and send positive thoughts their way. Our lives are so much richer having them in it and I am very grateful for all these years that we have known one another.

Monday, November 16, 2009

A Stressful Day

Here Griffin is in the pool at the YMCA and notice that it shows "5 feet". No one bothered to ask me or to inform the volunteers that Griffin couldn't swim and where the hell did they put him? They expected him to hold on to the side of the pool the entire time and the the idiot of a volunteer was taking the kids from the edge to swim on their own back to the edge. Damn good thing I went there because I had to scream at the guy, over the voices of 60 children, to NOT do that with him because he cannot swim!!!!! This is some guy who was stuck there with about 15 children and thank goodness the male lifeguard was right there too because sure enough Griffin let go of the edge of the pool and almost drowned!!!!!!!!!!!!!!!! Words cannot even begin to describe the panic and fear that I felt in a split second. The lifeguard reached over and got him out of the pool and I promptly took him away from the pool for the rest of the time. Griffin wasn't scared but I was scared enough by myself. Needless to say, I was very angry and swore that he would not participate for the rest of the week.

I spoke to the woman who was in charge of the program and let her know that I thought that the whole thing was a bad idea because there were not near enough volunteers there and that they had no right to put my child in the deep water without even knowing if he could swim or not. They just assumed that all the kids could save their own lives I guess. Griffin was not the only one to nearly drown, a little girl who went unnoticed a lot longer was truly scared to death and they kept trying to get her back into the pool after that.......such idiots!!!!!!!!!!!!!!!!!!

Griffin had such a great time I hate for him to not go back because he just wouldn't understand why he couldn't. So I insisted that he have a life vest tomorrow or he will not participate. I took him to the doctor this evening because I wanted to be sure that he didn't aspirate any water. He is okay. While we were there he got his flu shot and his H1N1 vaccine.

I can't really go all week because I am a full-time student and need that time for my work but be sure that I will be there tomorrow to make sure that they follow through. If I am not satisfied then he unfortunately will not go back and I will just have to find a way to help him understand. I want him to be able to participate with his class/friends for socialization but this was just too much.

Got to go to bed.

Friday, November 13, 2009

Once in awhile I have this tsunami-sized wave of loneliness hit me and last night was a doozy. I was missing my ex-husband with whom I had been with for 10 years, found out that he had been cheating on me for years and it devastated me for a very long time. But of course when I feel lonely I forget about all that pain and only remember all the good times that we had. I do wish that I knew how he was and communicate with him once in awhile but he is in Greece and has been since right after Griffin was born.

I miss my dear friend Glenn who is in Alaska with whom I would hang out with every weekend watching movies, talking, and eating pizza with pepperoni and jalepenos. We had such a great time together but I had to leave to go to the lower 48....so here I am. Tried dating but it is just a pain in the butt, trying to get to know someone is not something I find entertaining.

I feel better today, the daytime is good that is unless I hear a song on the radio that makes me tear up and feel blue again. Nighttime is the hardest part especially since my friends here do not answer their phones or return my calls. Guess they do have a life of their own. I'll be okay.

Griffin is doing so well! He has been so happy and mellow lately....we have had such a good time laughing, playing, dancing, and singing (he doesn't like my singing, don't blame him). He has been doing his homework with such ease and he sits there as long as it takes to get it done because he does not want to get a zero. I am so proud of him, he is such a big boy!

The weather is awesome today and the weekend is going to be in the 70's, hope we can get outside and do something. Griffin doesn't really like to do things outside....that is unless the computer was out there LOL.

I am a bit disappointed with the school because they still have not organized an IEP yet, guess they'll get it by the end of school. Don't know exactly what goals they have for him if they do not have one to go by. The one from his previous school is lame. It shows that he needs to have special help with reading when he is the top speller in his class and is reading at least 2 grades higher than his peers. At least he does have a very nice teacher, I do like her a lot.

Griffin is going swimming all next week for 2 hours a day at the YMCA which should be fun. I am definitely going to watch to make sure that he is okay because he really needs one on one supervision and they will not be providing that. Besides I want to see him have lots of fun.

Sunday, November 08, 2009

My OH My How He Has Grown!

Here is a picture of Griffin and his service dog Abby, who has been with us for over 4 years...maybe it has actually been more like 5 years. The time goes by so fast and Griffin is progressing in leaps and bounds. He has been doing so much better since I requested the increase of Abilify up to 10 mg., not so moody and much more stable emotionally and mentally he is able to focus and attend to his tasks.

Still no I.E.P meeting and that bugs me, I have practically been begging for one since the first day of school! All of the staff and his teacher are all wonderful and seem to have his best interest in mind but I am concerned that since he does have autism and that they are not so familiar with it is why it is taking so long for them to get all his testing done and to have a meeting for goal setting. One thing is for sure is that since living in Anchorage, Alaska, this has been the best school so far. Nothing will ever compare to Kathleen and all that she had done for Griffin and for me too for that matter. I still miss her terribly and wish that we could have her here with us.

I weaned myself off of the Lamictal and the Effexor that had been prescribed when I was in the hospital because they made me feel so manic and my head felt as though I was always just getting off of an elevator or just got off of a boat. I am still searching for a psychiatrist who knows what the heck is the right thing to do for me and to know which meds are going to be most effective. I am still having to take 2 Attivan to help me sleep on top of the Rozerum which used to work on its own but not anymore. I wake up in the middle of the night bumping into walls with my forehead and when I get up in the morning I feel like I am drunk, slurring my speech and can barely hold my eyes open. Once I take my morning meds. which includes Provigil, I am just fine for the rest of the day.

Went to a pulmonary doc who wants me to do another sleep study and to cut back on my Provigil and Attivan. I do agree that I am probably over-medicated but I need something that works put it their place. If by chance in the middle of the night I take my CPAP mask off then I don't get adequate sleep and feel horrible in the morning, as if I had not gotten any sleep at all. I do not know why I take it off other than I feel like I am suffocating, this is why we need a new sleep study to see if there is enough pressure or too much for that matter.

Griffin spent the night over at my sister's and her family. Griffin and his cousin had a great time together and didn't even squabble the whole time! Which is rare. My sister said that he was very well behaved and was a great little guy the whole time. I think that it is good for both of us to be apart sometimes in order to fully appreciate one another and to "miss" each other so that we are less likely to take our time together for granted. I think that may be the case for any two people who spend all of their time together. It is a healthy thing to do.

Well, I have a research paper due and I have been putting it off for some reason, I love working on it but cannot seem to motivate myself to finish it, which is highly unusual for me. I must add that I have had a plethora of appointments since the assignment and I have not had a very big window of time to spend on it, only bits of time here and there which I find very frustrating. Just as I get my creative juices flowing I am interrupted and have to stop.

The weather is gorgeous and I adore the autumn, my favorite time of year. The air is so crisp and clean, the temperature is perfect, especially if it is sunny and with perhaps a little breeze. I love getting out my sweaters and putting on my boots. If only it could stay this way for a few more months it would be so great!

Thursday, November 05, 2009

Prayers and Positive Vibes for My Brother

My brother almost left this earth 3 times on Tuesday evening as his heart stopped and he had to be resuscitated. I went to see him in the hospital today and he is not in the clear yet although some of the major concerns such as his liver enzymes and a very low blood pressure have improved. There is a concern that he is going into a very deep sleep and it is very difficult to wake him. The nurse was concerned but of course had no answers.

It breaks my heart that my dear brother is lying so helplessly in that hospital bed. He has been having seizures for quite some time now and nobody has any clue as to why. I want to go to see him everyday but I don't know how his wife and the medical staff feel about that. I don't want to be a bother but I love him dearly and want him to know that I care enough to come to visit him and to see his wife, have a short conversation with her and to let her know that she is thought of as well.

That is all for tonight. Not feeling very cheerful but in a few days I will post again and let you know how he is and how we are doing otherwise.

Thursday, October 29, 2009

What Does a Mother Do with ALL These Fears?


When I can't sleep at night, I lie awake thinking of all the things that scare me so much and what I could possibly do to avoid them or to remedy them should anything ever occur. The one that bothers me the most is that something happens to me in some manner and I am not able to care or look out for Griffin; for example, if I fell and got knocked out for a long period of time or if my meds caused me to not wake up or something. Who would know? How would Griffin understand that something is wrong with mommy? There is nobody nearby who checks on us daily or even weekly for that matter and if I should happen to not answer a call or two they would be none the wiser.

All I can think of is my precious child trying to find ways to feed himself and how he would be without his medication and probably would be running around here manic as hell and feeling quite helpless and perhaps even scared. I ponder the thought of teaching him to use 911 but would he understand when it is truly appropriate? I am going to teach him to use the directory on the land line and to call my sister or his godmother if mommy doesn't wake up. I can only hope that this would work and that he would know when to call and how to get their attention that something is wrong.

How does one overcome these fears and sleep at night, especially when we are all alone and the neighbors don't even pay attention to whether we leave the apartment or even whether Griffin gets on the bus for a day or more. For sure they wouldn't come knocking at my door. The manager has an older autistic son and I am going to ask her what she might suggest since she does live upstairs from us but she cannot be "friends" with us due to her obligations as a manager.

I am desperate for answers and welcome any and all input on the matters above. I just wish that there was someone to rely on to help us who was nearby. Guess that I should try to get to sleep, I look forward to hearing from my fellow bloggers and friends. PLEASE HELP!!!!

Monday, October 26, 2009

No More Snuggles

Griffin is really growing up and one of the biggest indicators is that he no longer wants to snuggle. It is bittersweet indeed, I am glad that he is becoming so independent but at the same time he is just doing it so fast and it kinda brings tears to my eyes.

We increased the Abilify to 10 mg. and it seems to be helping a lot=fewer meltdowns. Today I sent him to school without the Focalin XR so we shall see how that works, it would be great if I could take him off of it.

On the weekends he is on the computer most of the time searching for videos of funny commercials such as Geico, M&Ms, Aflac, and his favorite shows like Sesame Street, Teletubbies, and Wishbone. I am always in the same room with him just in case he stumbles across one accidentally that is a homemade video which may have a bad word in it. He is quick to change it as soon as he hears it or I let him know that it is not okay. He sure does get a lot of joy out of watching them and dancing around when he hears songs. The only thing that is not really so great is that he now has ecolalia and can recite them verbatim...over and over again. Oh well, it could be worse.

School is going great and I am working on a research paper about Alexander the Great, the man he was and the relationships that he had. Mostly information about him that most people never hear or read about. I am loving it and think that it is wonderful to have the opportunity to research something that is so intriguing.

The weather is so perfect this time of year, my favorite season...especially here in the mountains. It is my first fall in many many years back here in my homeland and I am loving every moment. Griffin thinks that it is pretty neat too. Haven't even turned on the heat yet but soon.

Friday, October 16, 2009

Loves to Dance, Especially Disco

video

My handsome big boy has always loved to dance and the older he gets the more into it he is. I was recently told that there is a dance class for special needs kiddos nearby and I am going to hop on that one right away. I sure do wish that the video was longer so that you could get a big belly laugh and thoroughly enjoy how much he is enjoying it.

He loves disco so I am going to find a compilation cd that has old disco hits on it so he can dance his little heart out as much and as often as he likes. I think that it is a great release for him and helps him cope with stress. Not to mention, it is great exercise which he doesn't get enough of. Actually it may be even more enjoyable for me to get a DVD of those old hits so he can watch them dance and pick up some new moves just like he did with YMCA.

He usually doesn't like it when I dance with him so I just stand back and take videos and snap pics of him and he loves that.

His unacceptable behaviors have increased so I am going to talk to his doctor about increasing the Abilify as he is having more mood swings lately. Some days it is impossible to get him to do homework and I refuse to give him the Focalin just for that because then he has no appetite and will not eat dinner. Since he won't eat lunch at school, because of the Focalin XR, he has to get some food in him in the evening.

Life is tough some days but I still love it and refuse to complain about him. He is still the joy in my life and I love him beyond compare!

Wednesday, October 14, 2009

A New Perspective on Autism

Please go to the link above and check out this woman's perspective on autism. I think that it is beautiful, enlightening, and the truth for me and our situation. Griffin is truly the epitome of unconditional love, this is what he has taught me since the day he was born. It is a sad world that we live in that so many conditions are placed on one another when we say that we love one another.

By the way, Griffin is the TOP speller in his class and is reading at 4th grade level and perhaps even higher. He needs to be re-evaluated to see where he is academically. He loves riding the bus and he loves going to school. He often talks about his classmates and especially how much they love his show & tell each Tuesday.

Friday, October 09, 2009

Autism Research/Changing My Direction

I have happily decided to change my major to child and family development so that I can eventually get my master's in autism research. I am so thrilled with my decision and cannot wait to get my general education classes finished so that I can move on to my core requirements.

I know that there is now a new statistic that every one in 91, that's 1% of children are diagnosed with autism and I feel that it will continue to increase. Therefore, the need for more research will be necessary not only now but in the future. It will be an exciting field to be in and I want to be part of it.

I just read online/in the news that Obama approved 60 million dollars towards autism research which is very encouraging. There is so little known about it and in so many different aspects of it that it will be an ongoing effort in order to solve the puzzle and to get what these children (and adults) what they need the most. It is especially important that the adults get what they need because so many do not even have an advocate to help them along in life. It is a shame that they need to go to group homes or assisted living which, I believe, compromises their need to be more independent.

I shall get off my soapbox for now but I must make you aware that I will be writing more and more about this as time goes on.

Saturday, October 03, 2009

Griffin's Godmother

Things are going just fine now that I do not have the sources of stress that I did have. I have caught a member of my family in two and most likely three lies and there will never be trust again. Then she tried to manipulate me into making her the sole guardian of Griffin after I had chosen someone else whom I trust implicitly and love dearly. But that's not going to happen, I am keeping the same person as Griffin's Godmother and nobody is going to change my mind....Period!

Griffin adores her and balls his eyes out when we have to leave her house, I love the interaction between them, the love is obviously mutual. I feel good about it and have no doubt in my mind that it is a sound choice. I don't care what anyone else thinks or feels about it and they can be as judgmental as they want to be but it makes no difference to me. When he is with her he just beams and runs around with glee.

If and when I leave this body then I will feel safe that my child is in the best hands that he possibly can be and that he will continue to have an advocate and a lot of love and patience in his life.

Monday, September 28, 2009

Stomach/Anxiety Problems

I have had stomach issues that have progressively gotten worse over time, to the point of vomiting pure acid. I had to sleep in a chair Saturday night so that I wouldn't get sick. I had so much anxiety that I couldn't sleep and had to take my prescribed dosage of 2 Attivan for sleep.

I have been stressed over my family and the fact that they have been talking behind my back and that I have been accused of doing things that I would never ever do, not in this lifetime! Ever since getting out of the hospital it has been nothing but one stressful situation after another with them. If not for that then I would be just fine and have nothing to worry about although I will be absolutely broke in the month of October. I usually don't stress over things like money and this is no exception because I know that it will all work out. However, when people talk about me especially when I am not around to defend myself and in the hospital, THAT bothers me!!!! And to add fuel to the fire, it was highly suggested that I not hang out with my friends, the ones who helped me when my family wouldn't, the ones who I grew up with right after I got out of the hospital. So there is the proof that things are being said about me and it was decided that I shouldn't have anything to do with this family of friends....of course that was "not" a source of stress either LOL!

I am not a child and Griffin and I are doing fine on our own, we did it for 5 years in Anchorage and we can do it again. At least up there I wasn't having stress related physical problems. I came here to have support but I will not accept help conditionally and be treated as though I have no wits about myself and cannot make sound decisions on my own.

I am just going to steer clear of everyone in my family and refuse any help in October, I will get by without them one way or the other. I may have to pawn something but I will get by. At least we do have food stamps (some but not a whole lot) and if I go to the discount grocery then I think that I can make our food stretch. The only catch is that Griffin will only eat certain foods and they do not always have those foods. I'll figure it out.

I was supposed to have an endoscopy today but didn't have a ride home and I sure do need to have it done. Something is terribly wrong and it is just getting worse. My Attivan only works when I take 2 at night, during the day when I only take one it doesn't give me any relief and tends to hurt my stomach.

Friday, September 25, 2009

Griffin's School Performance

This is Griffin with his familiar smiley face as he sits and waits for his school musical performance. I wanted to put a video on here but it was too long to be uploaded. Griffin didn't sing but the whole time the other kids were singing he danced. The crowd loved it and especially at the end of each song they would clap and Griffin would take a bow. He is so darn adorable people just can't help but love him.

Griffin's teacher brags that she and the classmates just adore him, that he is quite popular. Tuesday I took "Chucky Sue" the Chinese Dwarf Hamster, to show & tell and Griffin answered questions as the children would raise their hands and he would choose who to call on. The interaction was incredible and it was the first time that I had seen him socialize in such a manner. He seemed quite proud of himself and the fact that his mom and his pet were there and that the kids were so thrilled to see the hamster.

I am so glad that we moved and that he is in such a wonderful school/classroom. He has progressed in leaps and bounds. I am also glad that I stopped home schooling him so that he could have the opportunity to socialize and be around his peers. I feel that for any child this is essential. Otherwise how could they know when they grow older what to do in social situations? It is especially crucial for autistic children to do this because they do and possibly will always be delayed socially.

Each night I give thanks and tears come to my eyes when I think how far he has come and how bittersweet that he is growing and developing so fast.....we have come a long way. I have a collage that I made of his younger years and look at it each day and can't help but to smile and remember how much joy he has brought to me and how much I have learned along the way...from him.

Wednesday, September 23, 2009

Please Pray for Our Friends

My dear friends at Autism Schmatism are having a tough time as they have had a death in the family. So please visit the blog and give your support and let them know that you care. We love them dearly, they are so beautiful and loving. Please pray for them.

Monday, September 21, 2009

Feeling Better about Life

I am over it now and life goes on. I have returned to being grateful for the friends that I do have and especially for my little, not so little, guy. Griffin helps me to live in the present and I love that,so things are going well and I am not going to complain....not for awhile at least LOL!

Saturday, September 19, 2009

Mental Illness and the Lack of Concern

It always amazes me how people dismiss mental illness issues as opposed to physical injuries. I have had so little support and not even heard from those whom I thought were very dear friends to me. THAT HURTS LIKE HELL! Even my own mother didn't call to see how I was doing! Damn good thing that I am not suicidal because it would be a good time to check out.

As if it is not hard enough to get through all this and raise an autistic child then I don't even have the support that I need to feel like anybody gives a damn. I now have 2 people who are here that call to check on me and I truly appreciate that. Had to stop talking to my sister because all she would do is minimize my issues and trigger me to no end. I do have friends who call from afar and e-mail me to see how things are going and to show their concern.

It sucks to have a mental illness and how people treat me as if I had some kind of disease that they would die from if they contacted me. Thanks a lot people! Having horrible attacks of anxiety every day that are debilitating isn't enough, it is HELL to feel like I am hardly cared for and loved. My anxiety meds don't work for me and I am on the max dose. So now my PTSD is full blown and I can't get it under control. Sure wish that I was not treated that way too bad I wasn't in a car accident, I would have had flowers and everything!!!!!!!!!!!!!!!!!!!!!!!!

Tuesday, September 15, 2009

I am a Blessed Individual, I am Grateful for All that I have


Griffin will be taking O.T., P.T., and Speech this year (privately). We are also working on getting him back into O.T. swimming because where he goes for therapy has a pool! Unfortunately, I am going to have to stop the horseback riding. It is just too far away and even though we got a scholarship the money is just not there, sad to say. Maybe next season we can start all over again.

Griffin is still doing great in school! The only obstacle that we have right now is that he won't eat. He refuses breakfast, then takes his Focalin XR then he won't eat his lunch either. For dinner he still does not have an appetite and only wants one carb, like fries, mac & cheese, or bread. I wish that I could afford to get him some vitamins. The challenge there is too that it is hard to find one that he will actually take. I have wasted so much money on trying out vitamins for him. The doctor suggested that he take the gummy kind so when I have some money, in about 2 months, I can get him some.

Finances are very very poor this month, I frankly do not know how we are going to make it through. I hope that we have enough food and gas. Since I have therapy now, about 4o miles away, and Griffin has therapy plus doctor's appointments each week I have to be super careful with how much I drive. I just give thanks each day for what we have and have faith and a positive attitude that the universe will work it all out for us. I hate it when people say "it could be worse" because that just minimizes what we are going through. I wish that they would just be positive and say something like, "you are a blessed person" thus reminding me that we do have a lot to be grateful for.

I have learned throughout the years of therapy that validation is so important for someone who is going through a crisis and for someone to minimize just adds salt to the wound. It is not the way to support someone and show them that you really care and that you are trying to understand what they are going through. For me, my crisis and challenges are real and just because there are people out there who have their own challenges doesn't make a difference to me because it is my life that I am living not theirs. Giving someone positive support is the way to go and I am not one to complain either so I consider myself to be a positive-forward thinking person. So just an FYI for those of you who might slip and say that to someone, try to think before you speak and show some LOVE!

Thursday, September 10, 2009

What an Adventure Life is

Just got out of the hospital. Had a horrible manic attack and had to be taken by ambulance to the hospital where they admitted me. My pulse was 140 and they had to give me two Attivan to get it down.

No need for details, I have already e-mailed the people whom I wish to know about them. But I met some really cool girls on that floor, some whom I will always keep in touch with and will never forget.

They told me that the tough part is not going through the stay there but once I got home it would be worse and boy was that the truth. I had an anxiety attack my first night home and couldn't sleep for hours, woke at 4:00 then decided to take more meds to help me sleep just a little bit longer and well, it lasted way longer than that. I woke when Griffin did but couldn't stay awake all day. So, I am here to confess that I was "out of it" for a couple of hours while he was awake. I hate it but it is the truth.

I have an appt. to see a psychiatrist on Monday so that I can be sure that my meds are still working okay and that I will for sure get new prescriptions for next month. I am very relieved by that.

Had to drop my classes for this month because my books won't be here until tomorrow. That is a bummer because I was looking forward to having enough to keep me occupied while Griffin is in school. Not to worry though because I can start at the first of next month. In the meantime I will just start reading my text books.

Griffin did really well going from one house to the other while I was away, they all said that he had lots of fun. So that helps me to handle the fact that I missed him so badly. My sister even brought him in to visit me once and boy did that help me get through the rest of my stay there. Although I cried plenty, I got over it more quickly because I got to see his big smile and have lots of hugs.

Monday, August 31, 2009

Everything is Going Great !

Griffin had his first lesson on Friday and he did a great job listening and following directions. The instructor was simply awesome and made sure that the boys didn't get bored. They did exercises while on the horse and played games too. Griffin has no fear of being atop such a large animal, he seemed perfectly delighted.

School is going great as well. His teacher has sent home notes every day letting me know that he has had a wonderful day and that she is so happy to have him in her class. He is taking the Focalin XR 5mg each morning and it seems to be helping him out quite well. He loses his appetite during lunch but has breakfast and dinner so the doc said that it's no big deal.

We spent Saturday with Griffin's guardian, Stephanie, and had a great time. Griffin loves her so much and talks to her all the time that he is with her and on the phone as well. She has been such a wonderful support for us and so much fun to spend time with. We both love doing the same things and sit and talk for hours drinking lots of yummy coffee.

Can't wait for school to start! I miss Griffin while he is in school, I have stayed busy cleaning and made two collages; one of Griffin and one of my niece and nephew and now I read blogs and read my ancient history book. Hopefully I will begin school on the 7th...I am so excited to begin!

Wednesday, August 26, 2009

First Day of School

Griffin's new teacher wrote a note saying that he had a great day and she also called and left a message bragging about what a wonderful day he had. Needless to say I am thrilled and excited that perhaps this is going to be the right place for him to succeed.

I have spoken to everyone at the school who will have contact with him for therapy and special needs resource and they all seem to be happy that I am so pro-active and totally interested in what/how he does. I am just going to wait about 2 weeks to let things settle down and give them a chance to see how Griffin is doing then we can share information based on observations.

Every morning so far he has been up, eating, and ready to stand outside to wait for the bus, so that is a great sign. I was very productive yesterday, got the apartment totally cleaned and three loads of laundry done. Was still left with time on my hands and missing my little buddy, don't know what I will do today. I have started working on the book again, doing some writing so I will probably do that for the better part of the day. Can't wait until my classes start again so that I can put my brain to work again...nothing beats a good mental/intellectual challenge to fill the day.