What April Means To Me...

Since April is Autism Awareness month, I am moved to repost some blog entries of the past, sharing our experience. Learn a fact about Autism today, and you can help the awareness campaign!


This, is the face of Autism.... our face....

April is Autism Awareness Month. During this month, you will no doubt begin to notice the news media reaching out for pieces of this disorder to put into their articles and tv segments. The world has come a long way in acknowledging the growing crisis of Autism in America. In 1980, approximately 1 in 10,000 children were diagnosed with Autism.

Autism is a complex neurological disorder that typically lasts throughout a person's lifetime. It is part of a group of disorders known as autism spectrum disorders (ASD). Today, 1 in 150 individuals is diagnosed with autism, making it more common than pediatric cancer, diabetes, and AIDS combined. It occurs in all racial, ethnic, and social groups and is four times more likely to strike boys than girls. Autism impairs a person's ability to communicate and relate to others. It is also associated with rigid routines and repetitive behaviors, such as obsessively arranging objects or following very specific routines. Symptoms can range from very mild to quite severe. -- taken from autismspeaks.org

1 out of 150 children means there are a lot of families coping with Autism. Seven years ago, we didn't know anyone with Autism, and sadly, what I had in my own mind to reference this disorder, was the character that Dustin Hoffman played in the movie Rain Man. Contrary to that character, my other perception of someone that had Autism was ignorantly only imagined as a feeble person loudly making unrecognizable noises and rocking incessantly. I know that I am not alone in these thoughts, because through the years in talking with people about Autism, these were the same frames of reference others had before becoming aware.

Yes, Autism can and does reflect these same images in some individuals with severe forms of this neurological disorder, but there is also a wide spectrum of disorders and other not-so-obvious characteristics of the disease. Other ASDs include Asperger syndrome, Rett syndrome, Childhood Disintegrative Disorder, and Pervasive Developmental Disorder Not Otherwise Specified (usually referred to as PDDNOS).

Our son has come such a long way from where he was when he was diagnosed years ago. We attribute his unbelievable progress from such intense and early interventions. He showed "classic" autism signs in the beginning which ranged from no eye contact, lacking verbal and non-verbal communications, toe walking which required leg and foot braces, obsessive focusing of peculiar items (clocks, doors, vacuums, noises), "self stimming" such as spinning himself in circles, hand and ear flapping, as well as severe sensitivities to sounds, lights, touch and taste. We can't go so far as to say that he is "cured", because there is no cure. But if we could put him on our own scale of 1 to 10, 10 being the most severe, we would have to put him at a 1 or 2 now.

Over the years, we have come to know of and interacted with, families with children that have Autism in the most severe of forms. These parents are angels in disguise. We can't imagine what our lives would have been like without such early intervention. I'm not insinuating that early intervention will always pull a child out of the classic Autistic disabilities, but in many cases it has proven to be very successful in a child's progress. Not all brains are alike - this is not a one-size-fits-all disorder. I think awareness now is helping families much earlier, whereas in the past, so many children were being diagnosed "too late" in the developmental stages where early intervention has the most effect. Experts believe there is a sweet-spot of time in a child's early development where certain skills can be taught and the brain can sort of rewire itself into more typical behaviors when learned through therapies etc.

The great news is that there are so many wonderful ways of helping children with Autism communicate and relate to those around them thanks to the overall heightened awareness of people, and also educators and physicians being called to learn more about it. Studies are being held all over the world to try and figure this disorder out even more. Science has been making some awesome discoveries genetically as well, and people like you are deciding to care enough about it to make a difference in your communities. It's possible, that you can no longer walk through your daily life without knowing someone who is affected by this disorder.

This is a quote taken from D.M. Rosner, author and owner of AutismGear.com that really resonated with me, "If Autism hasn't yet touched your life, it most likely will in some way--in fact, maybe it has already and you didn't even realize it. Maybe that quiet girl who wouldn't look you in the eye was more than simply shy; maybe that screaming boy having a meltdown wasn't really a spoiled child after all....... Maybe it was Autism."

*************

You may search my blog using the word 'Autism' to read more posts...

Day 7 - Rain, Rain Go Away

Autism linked with rainfall in study....

Well, we have another study that once again is pointing to neurotoxins. This time, the pollution in the air being pulled into the ground by rain, perhaps affecting unborn children and newborns' vulnerable systems? When pollution emitted into the air, gets carried into the ground by rain water, it's absorbed by plants and animals, which we then consume.

Sounds sensible to me, enough so that we should keep rattling the proverbial cages about Mercury in ALL it's forms and our exposure to it - vaccinations AND our filthy environment.

This map speaks pretty loudly wouldn't you say? (click it to enlarge) Considering the high autism rates in those dark blue areas that seem to be consistant with these ongoing studies... and this map is almost 8 years old already. Pretty alarming. A more in depth article is here.

WASHINGTON (Reuters) - Children who live in the U.S. Northwest's wettest counties are more likely to have autism, but it is unclear why, U.S. researchers reported on Tuesday.

Michael Waldman of Cornell University and colleagues were searching for an environmental link with autism, a condition characterized by learning and social disabilities.

They got autism rates from state and county agencies for children born in California, Oregon and Washington between 1987 and 1999 and plotted them against daily precipitation reports.

"Autism prevalence rates for school-aged children in California, Oregon and Washington in 2005 were positively related to the amount of precipitation these counties received from 1987 through 2001," they wrote in the Archives of Pediatrics & Adolescent Medicine.

Dr. Michael Fitzpatrick, a London physician who wrote "Defeating Autism: A Damaging Delusion", expressed doubt, noting that autism diagnoses are on the rise in all climates.

No one know what causes autism, whose symptoms range from severe social avoidance to repetitive behaviors and sometimes profound mental retardation.

The U.S. Centers for Disease Control and Prevention estimates that about one in every 150 children has autism or a related disorder such as Asperger's Syndrome. Rates in many countries have been rising, although that may be partly due to increased reporting and diagnosis of the condition.

Doctors agree there is a genetic component to autism. They also theorize that something in the environment and possibly conditions in the womb can trigger the condition.

The researchers said their study supports this idea.

Perhaps infants and toddlers are kept are kept indoors in front of the TV more in rainy climates, and that somehow causes brain changes, they said. Or perhaps they breathe in more harmful chemicals while indoors.

Vitamin D deficiency caused by insufficient time in the sun might also be a trigger, they said. "Finally, there is also the possibility that precipitation itself is more directly involved," they wrote. "Perhaps a chemical or chemicals in the upper atmosphere are transported to the surface through rain or snow. "In recent years autism has been blamed on everything from discarded iPod batteries to mercury from Chinese power stations, from antenatal ultrasound scans to post-natal cord clamping, from diet to vaccines," Fitzpatrick said in a statement.

The U.S. Centers for Disease Control and Prevention has launched a long-term study to find the causes of autism and other childhood conditions.
____________________________________

Keep the studies going - they are making more and more sense with each new one. The layers are slowly being peeled back, and it's frightening to see how much we have dirtied the air we breathe and the land we live on.

HBO Film

I recently watched an HBO documentary film called Autism: The Musical. It will be running several more times this month on HBO if you can catch it or record it. It is definitely worth the time.

Here is a brief synopsis of the film:

Autism: The Musical is a call to arms, bringing attention to a modern-day epidemic while celebrating the value of the human spirit in overcoming any challenge. The film introduces Neal, Lexi, Henry, Adam and Wyatt - five autistic kids who, along with their parents, take part in a groundbreaking theatrical workshop. The Miracle Project was started by Neal's mother Elaine Hall with an eye towards helping children with autism express themselves while learning to socialize with other kids. Over the course of six months, we experience the frustrations, challenges and triumphs of the families both on stage and in their home lives as they prepare for the show. The creative process provides a key to unlocking the children's inner worlds. We also see how patience, understanding,love and community can be used to help children with autism better adapt to the world at large.

Click here to watch a short preview of this documentary: 50 second clip

I have seen this documentary twice already, and saved it on my DVR because I know that I will want to watch it again another time. The first time I watched it alone, the second time I watched it with Tom. We were both moved by the children’s stories, and the director’s decision to not focus on medical terminology, or to have any medical experts on the subject giving us a play by play of the many one-of-a-kind quirks the children are displaying throughout the film. It made for a very candid, raw and touching film to watch.

Tom and I agreed that we saw so many similarities in each of these featured children that mirrored our own experiences with our son. It once again spoke volumes to us about how individual this disorder is for each person.

For example, we related Carter to Henry who is a child with Asperger Syndrome and has a photographic memory for things that interest him. Henry had a love of dinosaurs and reptiles at the time and Tom and I chuckled as we recall when Carter gets on a subject and obsesses about it. It has been anything from the 50 United States, their capitol and motto, to the US Presidents or his favorite dinosaur, the Parasaurolophus. We related how Henry would retreat into pretending to be a dino and go into his own world when he was anxious.

We related our son to Adam, and his love for music and being able to get lost in it. We related to a scene where Adam was featured at the dinner table and refused to eat or try something new, and the immaturity that came along with the reaction. We related to the peer interaction at school when Adam gravitated toward the girls of the group that would play with him. We also related to the meltdown that took place at the musical rehearsal as Adam needed to be carried back stage and was acting more like a 2 year old than elementary school age child with his shouts of “let me go!” and being out of control without a lot of provocation.

We related to Neal in situations that showed him self-stimming to calm himself by running in circles or attempting to retreat somewhere alone. One scene showed Neal getting physical with a boy at a party when he was overwhelmed by the stimulus. We related to how quickly our son has reacted in the past in similar situations and that sometimes it is still a challenge to deal with his impulsivity control in certain situations that get too overwhelming for him.

Our relation to Lexi, took us back a few years ago, to a time when Carter was doing echolalic speech all the time. We remember what a trying time that was for us to wrap ourselves around how to handle it. He doesn’t do it very often now, but sometimes we catch him repeating and we need to prompt him to be aware of it. Lexi and Carter are very similar in the sense that they both can mimic someone else’s speech to the exact tones and inflections of their voices, like when she imitated Coach E’s greeting.

And then there was Wyatt. I think Wyatt was the closest to how Carter is at this age (7) now. Wyatt had lots of questions and was very sensitive to things around him, yet sometimes didn’t know how to express his feelings. It seems that Wyatt is becoming very aware of himself and others around him and the way he is being treated. Bullying becomes a subject with Wyatt in this film and how it makes him feel. This hits close to home with us as our son is getting older and more aware of people not being kind.

The film was all so genuine, unscripted and fascinating. It really emphasized the vast differences the way that this disorder can present itself in each person, as well as how each family has found a way to cope. We found it so cleverly done, that although it’s titled “The Musical”, it was less about the show they were putting on, and more about getting to know each child and their family dynamic, and what makes them special and unique. It was not a film that has one sitting through a bunch of facts about Autism, or one that has you writhing with pain that you feel for these families. It is a film about hope, and possibilities, and about demystifying the world of Autism.

You will laugh, and you will probably cry. As one reviewer of this film said perfectly, “…the journey to opening night proves more rewarding than whatever transpires after the curtain comes up.”

If you can, please take the time to watch this documentary. It will open your heart, enhance your own views and what we teach our kids about acceptance of others, and will make you look at your own life in a new way. It proves that anything is possible, and that being different is really OK.

In the news...

I'm a month early to discuss Autism Awareness since April is it's official month to 'get the word out' so to speak. There's one recent article in particular that has me, and I'm sure parents all over the world, scratching their heads again in confusion. It is in reference to the great debate about whether or not preservatives in children's vaccinations have been contributing to the rise in diagnosing ASD (Autism Spectrum Disorders). There is such a continuance of of back and forth debate between parents, medical experts, manufacturers, chemists etc., it's making our heads spin. I think particularly so, in those of us who have a child with Autism. Let me just say, that I am in no way against childhood vaccines. I think it would be foolish of us to not vaccinate our children against disease and outbreaks that we can control. However, we have become more informed parents our second time around. With Olivia, of course we still vaccinate, but we have modified our shot schedule to include no more than 2 vaccinations at one time. Sometimes we choose to have only one if it's a particular dose of something we are uncomfortable with, and we'll come back a few months later for the next one. Even though manufacturers have claimed that they can produce vaccinations that are "Thimerosal Free", if you research enough you can find dozens of articles about the process of elimination during manufacturing (they start out using it, but the chemical process they do is supposed to end up removing it all by the time it's ready for market) - but no final testing to see if it's actually free of the mercury in the end.

The CDC won't even etch in stone whether or not they believe vaccinations contribute to this medical crisis.

Our son is 7 now, and was diagnosed at around 18 months old. Thankfully, someone in his Mom's Day Out program had experience in Early Intervention and noticed some traits that Carter was displaying. It was like 20/20 hindsight once we were informed about what to look for as "signs". He had so many, but we had no idea what the subtleties were. We chalked it up to Carter just being Carter - some interesting quirks and such. She urged us to get an evaluation, and from there we started our journey through the world of Autism. He is truly remarkable, and has come such a long way from the early years when we were just starting out. We immersed ourselves into therapies 5 days a week, several hours a day, for the first couple of years. Every day, you could count on therapists from Speech, Occupational, Physical, and Developmental to arrive at the house, or for an outside appointment elsewhere. He even had a a couple of intense therapies through OT, one called Samonas (sound therapy) that supplies stimulation to the central nervous system. He had Sensory Integration Dysfunction that inhibited his ability to walk through his world without being super sensitive to his surroundings (sound, touch, taste etc.) Another was called HippoTherapy (therapeutic horseback riding, click here for a pic of him). He wore leg braces from the knee down for a couple of years (click here for a picture) to halt the constant toe walking, which was having a physical affect on his muscle tone and causing him to consistently fall and get hurt. It's been a long road, but we truly contribute his great outcome to such early and intense interventions.

He is very high functioning now and within a regular classroom environment with his peers. There will always be a continuation of social and emotional learning for him, as he has trouble reading social cues from people and understanding emotions of others, which can sometimes cause inappropriate behavior (such as, laughing or mimicking the sound of someones cry, instead of offering sympathy). He continues to have therapy for speech and occupational within the school to help him with communication skills, and his fine motor skills. His sensory issues have drastically improved over the years as well. He is a joy to be around, and anyone who has known him from the start could write pages and pages about his turn-around from then until now. Early help, early help, early help... we can't stress that enough!

We think it's imperative that kids are screened for Autism at their early well-checks. I'm past my bitterness now of being told time and again when Carter was a baby, that my Mommy Instincts were overreactions and that boys just "sometimes develop slower" etc. I'm confident now that Pediatricians are being more informed about diagnosis and what to look for in terms of signs. No, we are no longer with the Pediatricians that had their hands on the doorknob in our earlier years. It's been trial and error along the way to find someone that we trust completely. We really love the doc we have now, and we were so thrilled to know they have early intervention screening practices in place for Autism (can you believe some offices STILL do not do the proper screening?)

Anyway, back to my original reason for needing to blog about this topic today. There is a ton of information on the Internet that one can Google, and I have links on my blog on the right hand side if you're interested in the nitty gritty of the disorder. So I will spare myself the quick rise in blood pressure and raising my tone of voice about all the things that leave us scratching our heads about this epidemic - I'll wait until April!

Now, to add to the Great Debate of vaccination contribution to Autism, I present the article at hand.... the headline reads:

"Government Concedes Vaccine Autism Case in Federal Court"

Click here to read the article..... head scratching isn't it!?

STATS: 9 - 21 - 28 3/4

Happy 9 month (9 mo, 14 days) birthday, Olivia!
You weigh 21 pounds...
You are 28 and three-quarter inches long...

You are sitting, speed crawling, finding every nook and cranny not babyproofed, & pulling yourself up to a stand. You can clap your hands, point to objects you know in books, say "teddy", (TD) "dadda" (da-da), "kitty" (k-eeee), use sign language for more, hat, kitty, bird, all-done. You have tried all the pureed fruits and veggies and have started to self-feed pieces of Gerber brand carrots, green beans, pears, apples, peaches and Stars. You like yogurt, oatmeal and popsicles that Grampy sneaks you. You are growing out of your clothes faster than I can restock them. Size 12 months is the new size you are fashioning now. My heart is sad when I put all your smaller clothes in storage bins. Doesn't seem possible that you have reached these milestones already. Weren't you just born?

I don't have your head circumference written down, but Dr. W says it's growing perfectly - so that's all that matters. I can tell you though, it's shaped just like mine was; round and bald! Mine is still very round, but far from bald. Some day, you will have hair my sweets! In fact, I just found some pictures of myself labeled 8 months old, sitting in a highchair that I'm sure is not even CLOSE to be considered "code" these days. Some shiny metal doo-dad covered in lead paint that was probably all the rage fashionably speaking, 34 years ago. I have to say, we look exactly alike at this age. Carter was quite confused when he saw it. He is having a hard time learning that I was once a baby - he can't quite figure that one out. To him I'm just Mom - couldn't possibly have been a baby, or little girl. Kinda cute, isn't it?

So today Olivia had to get shots. I hate those appointments. She hates those appointments. The silver lining to it though, was that I thought she had to get 4 shots. Turns out she only needed 1, then I opted for the flu shot for her also, so she only had 2 pokes. I asked to see the package that the shots came in so that I could verify that there was no (widely controversial) Thimerosal preservative used in either. She did say that the flu shot for 3+ does still contain it, but is available without. I never vaccinated Carter with the flu shot, so this is new to me with Olivia. She has to get another one after 30 days. At her 12 month appointment, she'll get her 3 other shots. Ugg... just the thought makes my tummy turn. It would be foolish not to vaccinate though, so I have to roll with it.

I snapped some pictures of the Queen today after her 9 month appointment. I bought her this really cute hat at Target this week and think she looks delicious in it! So I had to include the new winter accessory in her photo shoot! Maybe if I make her wear it every day, she will become used to it being on her head by the time she actually needs to wear it outside. She's at the age that wants no part of a bib, socks or hat. Frankly, she'd prefer no clothes either, but I don't want to clean the carpets after accidents she might have in the buff. I'd get a puppy if I were up for that challenge. I'm not. I want a poop-free zone. So we'll keep her clothes on, and continue to visit the Humane Society to get our fix.

Here she is!