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Saturday, April 16, 2011

Interesting Conversation

We had an interesting conversation on the way home from the park. I don't remember every word, but I remember most of it, so we'll just go with the flow.

J (out of nowhere): How does someone get AIDS?
Me: There are several ways. Sometimes they get it from contaminated blood. Like giving shots at the doctor (there was more here; he understood I meant using the same needle for more than one patient, not getting shots in general) or donating or receiving donated blood. (which started a side discussion on blood types)
J: So they don't wash the needles in between people?
Me: No, they just throw them away and get a new one.
J: So how else can someone get AIDS?
Me: Along the same lines, people who use illegal drugs sometimes use a needle and syringe to inject the drugs into their blood. When you're using drugs like that, using a clean needle is the last thing you care about. Several people will sometimes share needles and they spread diseases like that.
J: So they do two bad things. They're using drugs and using contaminated needles.
Me: Yep.
J: So how else does someone get AIDS?
Me: By having sex with someone who has it.
J, after a minute of silence; I assume he was trying to think of what sex is: Like what a man and a woman do to make a baby?
Me: Yes.
J: So how does somebody catch cancer?
Me, happy he didn't pursue the sex thing: You don't catch cancer. It's not contagious. It's kind of like cells in your body multiplying that shouldn't be multiplying and they attack your body and your body can't fight back.
J: Like where the clones on Star Wars multiply and attack?
Me: Something like that.
He asked something else about cancer and I explained that environmental problems often cause or make cancer worse, like the chemicals in our food, the chemical cleaners we have in our houses and the pesticides on food and in the air.
J: So can you catch Asperger's and dyslexia or whatever that other thing is?
I think he was trying to say dyspraxia, but the answer is the same for either one, so I just answered his question.
Me: You're born with it. Just like with cancer, the things around us and the food we eat can make it worse, but those things don't cause it.
J, without missing a beat: Okay, so I know a decade is ten years and a century is a hundred years, but how long is a millennium?

Nope, that last question had nothing to do with AIDS, cancer, or Asperger's. Welcome to my world. LOL

Friday, April 15, 2011

A Responsive Specialist!

We had an appointment with a pediatric neurologist this morning. First let me say, I hate Atlanta traffic. I had to drive all the way through Atlanta in rush hour traffic and people are still as rude as they were ten years ago when I was commuting to my job downtown. I am SO grateful I don't have to make that drive daily anymore.

I made the appointment because I'm trying to get my son an IEP for school. We do homeschool, but officially, he's enrolled in our state's virtual school, which means public charter school. Which means hoops to jump through and standardized tests to take. He tests well, so that hasn't been an issue, but his focus seems to be getting worse and I want to address things before testing time next year. Also, in GA, 5th graders have to take a writing test at the end of the year. He is not physically able to write fast enough to be able to complete the requirements of the test in the allotted time. Because it can take months to get an IEP in place, I'm starting now (at the end of the 3rd grade). Also, there were some other concerns that I wanted to have checked. When I said something about my son not being able to tie his shoes, a friend sent me some information about dyspraxia. Although I wasn't really eager to add something else to the mix, I wanted an expert opinion.

So we got up earlier than any human should be up, battled Atlanta traffic and got to our appointment almost on time. I allowed plenty of time for driving. I didn't allow enough time for parking. It's hard to fit an SUV into a space when the cars on either side are crooked. The white lines are there for a reason, people.

Anyway, we saw Dr. Janas at Child Neurology Associates in Atlanta and she was wonderful! I'm so tired of doctors who roll their eyes or sneer or throw you out (yes, I was actually "fired" by a doctor) when you ask a question or speak the words, "I read..." 

Of course, the first thing she asked was, "What can I do for you today?" I told her, "We're here for an Asperger's evaluation, but frankly, I have no doubt he has Asperger's. I just need a doctor to make it official." She smiled, and said, "I understand."

She was great with J and with Little Brother. She was very patient and answered all my questions, with not an eye roll in sight. When I said, "What can you tell me about dyspraxia?" (I am learning how to approach these things in a non-confrontational way), her response was, "Tell me why you think he has dyspraxia." Alrighty then, she saw right through me. LOL

So the results of the appointment were:
He "officially" has Asperger's and OCD.
She gave me a referral/recommendation for Occupational Therapy for motor delay, hypotonia (low muscle tone), and sensory integration disorder.
She also wants him to go for Psychometric Testing, to include an IQ test (not really worried about that one) and tests for dysgraphia  and and dyspraxia. She said the hard part with this one is finding a place that takes insurance and is covered by our insurance.

She told me some things I didn't know (this is a constant learning experience).
Asperger's is mainly the social dysfunction and repetitive behaviors. Other behaviors are often the result of other issues. (BTW, she used the used the word "checklist" twice, which just goes to prove that the allergist who told me that Asperger's had to be specially diagnosed and that "there is no checklist" didn't know what he was talking about. I know what Dr. Janas meant, but it struck me funny that she used that exact word. But then Dr. Clueless is the one who "fired" me, so I already knew he had problems. As a friend pointed out, just as some doctor graduated at the top of his class, someone else graduated at the bottom of the class. I'm just sayin'.)
In 2012, the terms PDD and Asperger's will be removed from psychiatry’s diagnostic manual and will be folded, along with autism, into a diagnosis of austism spectrum disorder. I found this article from 2009 regarding this change (which incidently mentions the items in the paragraph above - social problems and repetitive behaviors - I had already written the paragraph above before I read the article - deja vu... or something).

Something else I learned today, neither Gmail nor Blogger (so I guess we can blame Google) spellcheck contain the words dyspraxia, Asperger's, hypotonia, or dysgraphia.

Thursday, April 14, 2011

Shameless Self-Promotion

Babble.com is taking votes for Your Favorite Autism Blog. If this blog has been helpful to you, I would really appreciate your vote as a way to reach others who may also find it useful. You can go here to vote.

They're also voting on Facebook Fan Pages. You'll have to go through a couple of pages to get to There Is No Normal on that list. If you follow me on Facebook, and enjoy the posts there, I would really appreciate your vote. If you're not following on Facebook, I do post links and other tidbits of information that aren't really blog-worthy, but that I think other AS parents would be interested in. You can go here to vote on this category, and here to "like" my Facebook Page.

I'm grateful for my readers and I appreciate your help!
Thank you!
Amanda

Saturday, April 2, 2011

World Autism Awareness Day

Today is World Autism Awareness Day. With so many sites out there that explain Autism Spectrum Disorders, I don't think there is any point in re-writing what is already done so well elsewhere. I will provide links later so you can explore on your own.

It wasn't long ago that the only person most of us knew with autism was Dustin Hoffman's character in Rainman. Now, almost everyone has a friend or family member with a child with an Autism Spectrum Disorder (ASD). The current statistics say that approximately 1 in 110 children in the U.S. are affected by some type of ASD. This can range from Pervasive Developmental Disorder (PDD) to severe autism. This number is up 13% from the mid-90's. We're not sure what has caused the increase. From my reading, it seems to be a combination of things.

  • Professionals such as teachers and pediatricians have become more familiar with the signs of the milder forms of ASD, such as PDD and Asperger's Syndrome, so are more likely to refer parents to neurological specialist for evaluation.
  • Asperger's Syndrome was not added to the Diagnostic and Statistical Manual of Mental Disorders published by the American Psychiatric Association until 1994, and was not included in autism statistics. See the first point.
  • ASD is genetic, though some argue that it can't be completely genetic because genetics can't change so rapidly in just 20 years. I agree that genetics haven't changed. What has changed is our toxic environment. Our food is loaded with chemicals, our homes are full of toxic chemicals used for cleaning or killing pests, our air and water is becoming more and more contaminated. Our bodies can only tolerate so much. When there is already something making the it hard for the body to work the way it should, bombarding it with toxins is more than many can handle.
  • What about vaccines? I may lose some readers here, but I just don't believe that vaccines are directly responsible for autism. HOWEVER, I do think they make things worse for those who were born with ASD. See point 3.
I never dreamed I would have a child with ASD. My cousin's son has Asperger's, but they live in another state, so I'm not around him much. So it was just on the edge of my radar. I knew it was out there, but it didn't directly affect me. I knew nothing about it. One day, after my son said something during a visit, my cousin asked me if he has Asperger's. Um, not that I know of. I went home and started researching and imagine my surprise when I realized he is almost a textbook case of Asperger's. Inability to understand social cues, repetitive behaviors, intense interest in one or two subjects, poor motor skills, "little professor syndrome", literal use of language. How did I miss this all this time?

All these years of family members thinking I should be stricter, strangers in the grocery store giving us dirty looks as he spins through the aisle, people implying (and some saying outright) that the reason he acts the way he does is because he's homeschooled.  If I had only known. But I didn't, and I'm not the only one. Since I've started this blog and started talking to other parents, I've gotten several emails and facebook messages and talked to a couple of parents in person who have realized after hearing me talk about Asperger's or reading the information I've posted, that their child has Asperger's. And these are all older children,  not preschoolers. One is a 15-year-old girl who has gone through the school system without anyone ever saying anything. Either she's a really good actress or none of her teachers have been trained in what to look for. None of these kids have been getting the help they needed because we didn't realize they needed it.

Until we clean up our environment and food supply, the numbers are only going to get higher. So what can you do?
  • Eliminate as many toxins and chemicals as you can from your home. This includes cleaning supplies, bug killers, and especially your food. You don't have to do it all at once, or throw away everything you own. Start small, by changing a few things at a time and changing brands when it's time to replace what you have. I recommend this for everyone, whether ASD is an issue or not. These toxins also cause cancer and other health problems.
  • ASD is nothing to be ashamed of. Don't be afraid to talk about it. I'm not suggesting you rent a hall and give a community speech; just don't feel that you have to hide it. For one thing, knowing your child has ASD helps others to understand your child and you. It may also help them understand someone else in their life.
  • If you're not familiar with ASD, take a few minutes and read some of the pages (or sites) below.
Resources:
Talk About Curing Autism
CDC ASD Page
Wikipedia Asperger's page
Wikipedia Autism page
National Instititute of Health Autism page
Autism Speaks
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