Here at the Mothership, we are accepting of autism as a part of our lives. It's not all doom and gloom and "Oh! Woe is me!" simply because we live with an autistic child.
Sure, there are challenges at times, some of them pretty big. To deny that there are challenges would be dishonest and one thing I am not is dishonest. I've been pretty open with some of the unique problems we've encountered and have no reason to hide facts.
Fact is, there is no cure for autism. To me, it seems ludicrous to pursue a cure at this time. I have a child to raise. While others are busy trying to pinpoint a cause and subsequent cure, I am watching my child grow up. Different strokes I suppose.
But what happens when a parent becomes fixated on, for lack of a better term, fixing their autistic child? For starters, they go to the support forums. Once there, several people will stand out to the new parent as someone who obviously knows all about what is called "the biomedical approach" to curing autism. Ugh. These several people have some theories about autism causation and cures. And they are incorrect. Just plain wrong. Most popular on the list is the now-thoroughly-debunked claim that vaccinations are responsible for causing autism.
Stories abound of a perfectly normal developing child who was lost through the shots. They were just fine until this vaccination or that one, then they were finally diagnosed as autistic and the bottom dropped out of the parent's world. Let me issue a disclaimer that I do understand that adverse vaccine reactions are well documented since the very beginning. Not everyone handles vaccines well. Fact. However, numerous studies have exonerated vaccines as a cause of autism.
Why do some parents fixate on vaccines as the cause of their child's autism? Money. Mean green. Lawsuits have been filed against the US government for mandating vaccinations for entry into public schools. Here is a link for what happened in those lawsuits. In short, there was not enough evidence produced by the plaintiffs in the trial cases.
Those who believe that vaccinations are the cause of autism will try all sorts of unproven and untested therapies on their autistic children. Chelation, massive doses of supplements, clay foot baths (really!), powerful antiviral drugs, Hyperbaric oxygen treatments, even traveling out of the country for stem cell treatments, none of which are approved treatments for autism--these are what I call snake oil.
A partial definition of snake oil, taken from Wikipedia reads: Snake oil is a traditional Chinese medicine made from the Chinese Water Snake (Enhydris chinensis), which is used to treat joint pain. However, the most common usage of the phrase is as a derogatory term for quack medicine. The expression is also applied metaphorically to any product with exaggerated marketing but questionable and/or unverifiable quality or benefit.
It's all about marketing. Parents of newly diagnosed autistic children are easy targets. Autism is mysterious and there are few known causes. My own theory is that sometimes it just happens when the genes of the parents combine in a certain way. My explanation for the rise in autism diagnoses over the past several years is pretty rational. The criteria for diagnosing autism in children changed. More kids are diagnosed at an earlier age, because there is more awareness, and also because Asperger's was placed under the autism spectrum disorder category. Furthermore, diagnoses of mental retardation and disorders like childhood schizophrenia have plummeted as the diagnoses of autism rose. It's simple, really.
So. What got me to thinking about snake oil this morning? This. Oh holy cow. Now it's Lyme induced autism. Wow.
Here's the blurb on it.
New Energetic Device For Healing!
Experience the new Amega AMWand, utilizing Zero Point Energy to provide an incredible benefit to those with autism, Lyme disease and associated disorders. This new wand will be utilized as an "at home" program in assisting the central nervous system, opening up chakras and more! Dr. George Gonzalez, creator of Quantum Neurology, is utilizing this device as his new "patient device". There is not a lot of data on this at this time, but physicians are using it in their offices and seeing results immediately.
Mkay. A wand. To cure autism. Now I've seen everything.
Parents of newly diagnosed children with autism, all I can say is this....
CAVEAT EMPTOR!
If something sounds too good to be true, it probably is.
Tuesday, August 24, 2010
Tuesday, August 17, 2010
New beginnings
Summer's almost over here in beautiful Central Illinois. It's been an absolutely wonderful time with hot temperatures ruling the weather. Eli has what we refer to as a "savage tan" to show for his days in the pool and some new muscles showing to boot! I'm wondering how to really keep his swimming momentum going into the fall since he is so at home in the water. Hopefully we can afford a YMCA membership to let him swim all year round, but that's a different post.
New beginnings refers to a couple of things now. First we have school starting this Thursday! The kids are ready. This past month they've become restless and bored with hanging around the house. Budget constraints eliminated most activities, but then again, I can't recall a ton of paid-for activities during my own childhood summers. So I don't feel guilty allowing them to get bored. It kind of fires them up for school to start and see their friends again!
For little Eli, the start of the school year also brings anxiety. We spend roughly the first month that school is in session just acclimating him to his new teacher and classroom and helping him click into a routine. I expect it now, so that helps a great deal. Oh sure, all kids have some trouble adjusting at first, but for most, it passes quickly. Not so with my son. It will hopefully help that for the first time, he will have the same Special Ed teacher that he had the previous year. We had a great experience with her last year and I was delighted that she stayed on!
We have a choice of schools in my town. At last count I believe there were 11 elementary schools to choose from. Each one has its own unique qualities and characteristics. Some are old buildings, some are fairly new, some have AC and some don't, some have a focus on sciences while others focus on performing arts. When it came time to choose Eli's school, I decided to pick the one that most of our neighborhood kids attend in the hope that he would make some friends and play in the neighborhood. Well, that didn't quite work out, as the one boy close to Eli's age who lives on our street is polar opposite, but still, it worked out for other reasons.
There are only two classes per grade at his school. I felt this would be a cozy situation for him, and that by the fifth grade, he would know every child in his grade. He's really good at remembering names now and it does help that most of his classmates have been in his room since kindergarten. They are familiar. He knows which kids are kind to him and which ones leave him alone. He knows which kids tend to bully or pick on other kids and to avoid them. For the most part, they are all great kids. I inwardly groaned when I saw that the resident tattle-tale was once again in his class, but even tattle-tales deserve a second chance.
In previous years, we've experienced a great deal of anxiety with the beginning of the new routines. It takes Eli a good long while to really settle in. But I am very hopeful this year. He has shown some great growth over the past year in a lot of areas. He converses much better and sometimes even listens to answers of his unending stream of questions! He tolerates some good natured teasing now, which is a huge step. This morning I told him he was a pretty boy, which I know he hates, but I was tickling him at the time, and told him I said it just to tease him. Teasing of this nature is not unkind, and he is finally beginning to grasp that concept.
Our other new beginning is a new doctor for Eli. This in itself is a huge step for me. I took Eli in for a checkup this summer and was incredibly disappointed in the lack of expertise that my old family doc possesses concerning autism disorders. He's a great doc for ear infections and the usual childhood ailments, but since Eli rarely if ever suffers from those ailments, the doc has outlived his usefulness for us. Deep breath. After seeing him and having him once again wave off a lot of Eli's issues and tell me to book appointments with the local developmental pediatrician, I bit the bullet and ran the other way.
A bit of history on our local developmental pediatrician. Just from my perspective, as we only saw him once, when Eli was 5 (I think). I filled out 14 pages of questionnaires for the appointment. The ex and I took Eli in for the appointment, and the doc spent around 45 minutes talking to us and referring to the pages I'd completed. He told me and the ex that it seemed like Eli was outgrowing a lot of his autistic symptoms and sent us on our way. That was it. The ex took that tidbit of information and decided that Eli's autism was no big deal, that we need not look into additional therapies, yada yada yada. It was his golden ticket.
Here's the thing. Those of you who have autistic kids already know that yes, many symptoms will fade and/or disappear over time. You also know that those symptoms will be replaced by different, sometimes more challenging symptoms as the child matures. Yep. That's what happens. I feel that a really good doctor would have helped more, been more involved, I don't know. I just felt sort of cheated and misled.
So here we are, Eli is now 9 years old and still very much an autistic boy. He is a sweetheart but I cannot deny some of his issues. The biggest one right now is anxiety. Seemingly innocuous events and occurrences will cause him to melt down. Sometimes it is obvious what caused it, others not so much. He is developing better self control, but the truth of the matter is that a melt down is disruptive in school and at home, and his self control is just not good enough quite yet.
After bailing on the old family doc and the local developmental guru, I phoned Easter Seals to ask for help. We do not have medical insurance. I am still looking for work, with no luck, and don't yet qualify for Medicaid, but there is a state run program for kids that I've applied to. At this point, I really don't care if I go into debt for him. He needs some help. Easter Seals gave me the number of a developmental pediatrician an hour and a half from our city. My reasoning is that E.S. does not have any interest in promoting a certain doc, while our local hospital does have that interest. The local network will only refer you to docs within their network, right? They look out for their own, whether they are really good or not. According to the nice woman I spoke to at E.S. the doc she referred me to has come with great reviews from other parents of autistic kids. That's good enough for me.
So mid-September, Eli and I will travel to meet the new doc. I am really pretty excited about it. I anticipate more referrals for child psychiatrist and pediatric neurologist as well. That's all part of it. Whatever it takes to really help Eli is what we will do. I don't expect miracles, and I know that there is no magic wand for his anxiety, but what I hope for is tools to help him manage it better. I think that's being realistic.
Wish us luck! New school year, new doctor, and new beginnings. Pretty cool, don't you think?
New beginnings refers to a couple of things now. First we have school starting this Thursday! The kids are ready. This past month they've become restless and bored with hanging around the house. Budget constraints eliminated most activities, but then again, I can't recall a ton of paid-for activities during my own childhood summers. So I don't feel guilty allowing them to get bored. It kind of fires them up for school to start and see their friends again!
For little Eli, the start of the school year also brings anxiety. We spend roughly the first month that school is in session just acclimating him to his new teacher and classroom and helping him click into a routine. I expect it now, so that helps a great deal. Oh sure, all kids have some trouble adjusting at first, but for most, it passes quickly. Not so with my son. It will hopefully help that for the first time, he will have the same Special Ed teacher that he had the previous year. We had a great experience with her last year and I was delighted that she stayed on!
We have a choice of schools in my town. At last count I believe there were 11 elementary schools to choose from. Each one has its own unique qualities and characteristics. Some are old buildings, some are fairly new, some have AC and some don't, some have a focus on sciences while others focus on performing arts. When it came time to choose Eli's school, I decided to pick the one that most of our neighborhood kids attend in the hope that he would make some friends and play in the neighborhood. Well, that didn't quite work out, as the one boy close to Eli's age who lives on our street is polar opposite, but still, it worked out for other reasons.
There are only two classes per grade at his school. I felt this would be a cozy situation for him, and that by the fifth grade, he would know every child in his grade. He's really good at remembering names now and it does help that most of his classmates have been in his room since kindergarten. They are familiar. He knows which kids are kind to him and which ones leave him alone. He knows which kids tend to bully or pick on other kids and to avoid them. For the most part, they are all great kids. I inwardly groaned when I saw that the resident tattle-tale was once again in his class, but even tattle-tales deserve a second chance.
In previous years, we've experienced a great deal of anxiety with the beginning of the new routines. It takes Eli a good long while to really settle in. But I am very hopeful this year. He has shown some great growth over the past year in a lot of areas. He converses much better and sometimes even listens to answers of his unending stream of questions! He tolerates some good natured teasing now, which is a huge step. This morning I told him he was a pretty boy, which I know he hates, but I was tickling him at the time, and told him I said it just to tease him. Teasing of this nature is not unkind, and he is finally beginning to grasp that concept.
Our other new beginning is a new doctor for Eli. This in itself is a huge step for me. I took Eli in for a checkup this summer and was incredibly disappointed in the lack of expertise that my old family doc possesses concerning autism disorders. He's a great doc for ear infections and the usual childhood ailments, but since Eli rarely if ever suffers from those ailments, the doc has outlived his usefulness for us. Deep breath. After seeing him and having him once again wave off a lot of Eli's issues and tell me to book appointments with the local developmental pediatrician, I bit the bullet and ran the other way.
A bit of history on our local developmental pediatrician. Just from my perspective, as we only saw him once, when Eli was 5 (I think). I filled out 14 pages of questionnaires for the appointment. The ex and I took Eli in for the appointment, and the doc spent around 45 minutes talking to us and referring to the pages I'd completed. He told me and the ex that it seemed like Eli was outgrowing a lot of his autistic symptoms and sent us on our way. That was it. The ex took that tidbit of information and decided that Eli's autism was no big deal, that we need not look into additional therapies, yada yada yada. It was his golden ticket.
Here's the thing. Those of you who have autistic kids already know that yes, many symptoms will fade and/or disappear over time. You also know that those symptoms will be replaced by different, sometimes more challenging symptoms as the child matures. Yep. That's what happens. I feel that a really good doctor would have helped more, been more involved, I don't know. I just felt sort of cheated and misled.
So here we are, Eli is now 9 years old and still very much an autistic boy. He is a sweetheart but I cannot deny some of his issues. The biggest one right now is anxiety. Seemingly innocuous events and occurrences will cause him to melt down. Sometimes it is obvious what caused it, others not so much. He is developing better self control, but the truth of the matter is that a melt down is disruptive in school and at home, and his self control is just not good enough quite yet.
After bailing on the old family doc and the local developmental guru, I phoned Easter Seals to ask for help. We do not have medical insurance. I am still looking for work, with no luck, and don't yet qualify for Medicaid, but there is a state run program for kids that I've applied to. At this point, I really don't care if I go into debt for him. He needs some help. Easter Seals gave me the number of a developmental pediatrician an hour and a half from our city. My reasoning is that E.S. does not have any interest in promoting a certain doc, while our local hospital does have that interest. The local network will only refer you to docs within their network, right? They look out for their own, whether they are really good or not. According to the nice woman I spoke to at E.S. the doc she referred me to has come with great reviews from other parents of autistic kids. That's good enough for me.
So mid-September, Eli and I will travel to meet the new doc. I am really pretty excited about it. I anticipate more referrals for child psychiatrist and pediatric neurologist as well. That's all part of it. Whatever it takes to really help Eli is what we will do. I don't expect miracles, and I know that there is no magic wand for his anxiety, but what I hope for is tools to help him manage it better. I think that's being realistic.
Wish us luck! New school year, new doctor, and new beginnings. Pretty cool, don't you think?
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