It's Party Time

So the Walk Now for Autism Speaks event was on 10/10 and I have to say I did my fair share of fundraising. My total was $2710.10, or $700 over goal. How I did was was by basically using my Facebook page as a constant push for donations. I don't feel bad about it. When the math of autism breaks down, $2710.10 wouldn't even cover one child's one year of private services (speech, OT, music, play). So it's the least I could do.

We also used the day to take advantage of Nicole Tugeau's Kidsfest, complete with popcorn and live band. Ellie didn't socialize too much with kids she didn't know, but she did love the band. I think "My Sharona" is a new hit.

Play with me

Ellie has taken to inviting Helen into her play world, which kids on the spectrum don't usually do. It doesn't come intuitively to them. I spent over a year in play therapy with her, and she still participates in a playgroup on Saturdays that works on both play skills and functional speech skills. Here the girls are doing the Flora-Fauna-Merryweather trifecta from Sleeping Beauty. Ellie has finally learned to use toy props to create pretend play, and she's good at it. I know her brain struggled with this skill, but boy, she sure mastered it. Go, go, fairy girl.

Paging Dr. Wingnut

I went to the Milestones Autism Conference today (www.milestones.org). What a terrific event. I was able to enjoy Brenda Smith Myles's presentation and also my old buddy Dr. Wiznitzer's. Dr. Myles does a lot with social curriculum and social skills. I thought she was both funny and spot-on when it comes to stressing the functionality of our children's skills. Dr. W. did an engaging and thorough review of research methods in medicine, particularly as it relates to ASD's. His explanation of why the mercury in thermerosol cannot cause autism was nothing short of amazing in its simplicity.

I love conferences because I find them rejuvenating. Just when I think I am tired of living the ASD parents life I go to one of these events and get excited about learning again. I want to try new techniques with Ellie to help her with her social communication. I want to tell the world, science is good. Science is a gift to us from the Lord. Don't insult Him by embracing voodoo. It will never serve us well.

All done preschool for now.

Ellie is finished with preschool for the year, and starts communication camp in a few weeks. Here are some snaps from her picnic and the last day of school. She got the award for "Most Cheerful." The twins will attend Gearity next year, and I'm sure they will be as transformed in their own way as the big one.

I don't know why I'm shocked

I have to share with you a few things that people post on the Autism Speaks web forums. Really, I couldn't make this stuff up.

Let's take a look at this one. Mumps can only cause sterility, in males, if they catch the illness after puberty. So an easy way of preventing sterility from mumps is making sure that children have mumps when they are children, not when they are teenagers and adults. Does the vaccine prevent mumps in teenagers and adults? Judging by the large outbreaks of this illness in the last few years in the U.S. and the U.K., not it does not.Of course, even if a male someone does catch mumps as a teenager or adult, sterility is fairly unlikely. I'll give a virtual lollipop to each searcher who finds a properly documented case study of sterility following mumps. For example, Franklin Delano Roosevelt, had mumps as a teenager at Groton, along with lots of other fun stuff like whooping cough. And here is the trivia question of the day: how many children did he father?Gotta add that tetanus is NOT a communicable disease, so mass outbreaks, even in the absence of vaccination would be a very difficult achievement. No one ever got tetanus from a cough or a sneeze!

So this person believes that
1. We should allow children to get the mumps rather than the vaccine
2. Risking sterility as a result of the mumps is preferable to getting the vaccine, because this person believes the vaccine causes autism. We all know it doesn't, but go with me here.
3. Getting tetanus is also preferable than getting vaccinated for it. Obviously, this person needs a lesson or two in communicable diseases, as tetanus is obviously not transmitted through respiratory spray. But then again, I don't know if this person can spell spray, let alone respiratory.

Another one!

i just wanted to say, i read jennys other book the other day mother warriors, good book, i love how she writes her books, keeps ya interested. i didnt watch the videos al posted i dont think there was any purpose watching them in my eyes i know both sides the hating and the loving, but just wanted to say that i read her book, and saw where she wrote she didnt cure her son of autism she just recovered him which was glad she worded that in words as she told barbara on the view.

I'm sorry, was this English? I blanked there for a minute. Another round?

That is just the way some people are going to be. Argue about something they know nothing about. They keep spreading misinformation about vaccines, diseases. The ND crew will always have a nice little uneducated cult following based on fear mongering. In fact, biomed is grounded in science. If they don't want to help with all of their kids issues because of their close-mindedness, that is up to them and to the detriment of the kids. Sad really. You can tell they don't post to help anyone, just to try and argue about something they don't understand. So be it.

This is from the same woman who alleges that

Well I don't know about mumps but apparently with the measles, something like 90% of the cases were exposed from overseas by being in contact with people who were somehow. I mean think of how the swine flu has made it all over the place. It seems you are assuming that he was infected by an unvaccinated child but that may hardly be the cases at all. Some viruses mutate a lot like the flu but others don't mutate as readily. However if they did, that would make me question the efficacy of every vaccine altogether like I do the flu. Apparently according to a couple of sites, the mumps virus mutates very slowly. So of course at anytime a virus could mutate to wipe a bunch of folks out and a vaccine would do nothing. However, mumps is not one of those super deadly viruses as I have read, but there can be complications from it to watch for. Thats the spot we always find ourselves in. Heck, scientists could splice and make a new super virus and it could get out. You just never know. Make sure he is getting lots of vitamin c and fresh fruits and veggies and no sugary treats. Olive leaf extract is a natural antiviral in case you ever want to have something to help kick viruses. Also is colloidial silver.

Ever wonder why it's so hard to make real progress in scientific and medical (not BIOmedical) research? Because of people like this. People who loves them the voodoo. People who get their Ph.D.s in Googling and then purport to be experts in immunology, bacteriology, histology, virology, pediatrics.....everybody is in on the conspiracy. Everybody is being paid by Big Pharma. Heck, I've been accused of being a Big Pharma "plant"! Any doctor who gets a grant from any pharmaceutical company is automatically discredited. Anybody who doesn't get drink the Kool-Aid is "misinformed."

And one more closing whopper from the aforementioned expert on measles:

M- you can't start off by saying it is not viral related and move to that there may be a small chance. Science is not my God nor do I follow that things have to be done the way some man made up. It is good to listen to those who may no better, but they may not always be right and I pray to my God for guidance. THat is why I have chosen this way.

And the Darwin Award goes to......

I'm so happy I could spit.

http://www.jennymccarthybodycount.com/Jenny_McCarthy_Body_Count/Home.html

a-ha

http://www.timesonline.co.uk/tol/life_and_style/health/article5683671.ece

Picnic Lunch

This is how I envision the girls as old women...sitting around, having picnic lunch, gossiping. Only in my fantasy Ellie is as much of a participant as the other two. With speech going as well as it is for her, that may become her reality soon enough.

Rates

We just got Ellie's developmental eval in from Case's Project BRIDGE. She has made enormous gains in some areas in the last year. These include two big areas of social-emotional development, relational behavior and self-awareness. Her rate of development increased by 69% in the first area and 67% in the second. This means that she developed in those areas that much faster because of the intervention (there is a statistical way to explain this that I can only do in my head, but probably not well in print). I am thrilled. She also showed noticeable improvement in discrimination behaviors (cognitively, not culturally) and object use. I can't emphasize enough how much this therapy works, and what a difference it has made for a kid like Ellie. I wish everyone had a Dr. Wiggers, a Miss Carolyn and a Miss Sung Hee. Bless you girls.

Composition

Ellie likes to compose music now spontaneously. I think it's a way for her to use language in a way that means something to her and means something to someone else. When I get Blogger to finally upload a movie, I'll post it.

Lee-Silsby, Part 2

I called Lee Silsby pharmacy this morning to get the scoop. I wanted to hear what the guy had to say. Here is the conversation. I used my cell to record my responses. His are to the best of my recollection:

[pharmacist gets on the phone]This is the pharmacist.
[ME] Hi, I came across your info online and I was calling to find out about your autism treatments.
[P] Do you have a child with autism?
[ME] I have a child with PDD.
[P] well, we have many options for you. I would suggest you start at the website www.autism.com for more information about biomedical autism treatments.
[ME] sure. well, I just want to know what you offer.
[P] well, kids with ASDs have mineral and vitamin deficiencies.
[ME] do they?
[P] yes.
[ME] how do you know?
[P] what?
[ME] how do you know that every child on the spectrum has this?
[P] well, the biomedical research shows it. it comes from their blood draws.
[ME] I guess I don't understand, if autism is neurological, what a blood draw is doing in the mix.[P] well, are you seeing a pediatrician?
[ME] of course.
[P] most pediatricians are not going to go the biomedical route. they won't offer you the type of testing biomedical physicans offer. they tell you it's neurological because that's what the AAP tells them. we work with several biomed doctors who have had amazing results using both our treatments and then other treatments they have designed.
[ME] but these guys, they aren't at UH.
[P] no.
[ME] they don't practice in a hospital.
[P] biomedical isn't part of the mainstream medical community. did you see Larry King the other night? there was a doctor from UH on with Jenny McCarthy, I've met with him at conferences and he is interested in what we're doing but won't commit to research on it.
[ME] Max Wiznitzer, yeah. I know him.
[P] you do?
[ME] he's my daughter's neurologist. and I have to say, I don't think Max is all that interested in what you're doing. maybe he was just being polite.

[silence here]

[ME] so you offer vitamin supplements, it looks like, and topical treatments.
[P] yes, the vitamin supplements help kid with ASD replenish what they are missing, and the topical treatments help detoxify their systems.
[ME] and this detoxifying, this will help with the flapping?
[P] I'm sorry?
[ME] welll, a lot of kids flap, you know....they have a lot of gross motor things going on...and usually it's some kind of behavioral modification that teaches them to self-monitor their bodies...I am wondering what this detoxification does for the flapping.
[P] look, if you just go to the website I mentioned, you'll get all the info you need about how our supplements cure some of these symptoms.
[ME] cure them?
[P] I have had patients all over the world be cured of many of their symptoms through our products. We also offer vitamin B12 shots, dietary programs...
[ME] people are just giving their kids shots?
[P] oh yes.
[ME] do their tell their doctors they are doing this?
[P] sometimes not, no.
[ME] and you're ok with that?

[silence here]

[ME] I am just still not getting how your stuff works and how you are getting reimbursed by insurance companies for it, when I can't get mine to pay for $3000 in outstanding OT bills we have from the Cleveland Clinic, which was prescribed by a doctor. How is your stuff getting covered and it just seems like kitchen brew?
[P] I don't have half an hour to explain this all to you.
[ME] but you are willing to sell me god knows what to rub on my kid and leech stuff out of her body?
[P] I am not sure what you want me to tell you.
[ME] well, here's what I'm going to tell you. I am boycotting your pharmacy because I think what you are doing is ethically wrong. You are selling stuff to desperate parents because they think their kid is broke and you can fix them.
[P] We have research from thousands of parents...
[ME] the plural of anecdote is not data.

[here's where I hung up.]

Boycott Lee-Silsby Compounding Pharmacy

The Lee-Silsby Compounding Pharmacy in Cleveland Heights is making so-called "compounded medicines for autism." The claim (in testimonials, because there is no refereed, IRB controlled research) is that these drugs magically (presumably with sparkles and fairies and rainbow colored unicorns) take away all of the symptoms of ASD. They also sponsor a website, Age of Autism, which is anti-vaccine, anti-medical, pro-Jenny McCarthy (I cannot believe I actually have to type that). Chelation is one of the so-called treatments that Lee-Silsby supports (a treatment to remove heavy metals from the body, a treatment which has been discredited scientifically and which is dangerous to children). Parents are cooking up treatments for their child's autism and administering them with little to no medical supervision. In my opinion, this is tantamount to child abuse. It's funny that these clowns rail against Big Pharma and all the money that they allegedly make on vaccines and traditional psychopharmacological treatments for ASD related conditions, but who is asking Lee-Silsby how much they are making on their baking soda-toothpaste-hocus pocus--voodoo mess that they are selling to desperate parents? You bet your sweet bippee I am.In the meantime, I realize that it is important to support Cleveland Heights businesses. However, as a parent of a child with an ASD, I cannot support a business that promotes medical quackery and sells it as science. You make your own decision.

Oh no, not again.

http://www.cnn.com/video/#/video/us/2009/04/04/lkl.jim.jenny.autism.pt1.cnn

This is worth it just to see Max Wiznitzer, who in my opinion could slam dunk Jenny McCarthy into cold storage blindfolded.

Everyone likes a dance party

...especially when it involves cupcakes and the old school Sesame Street playhouse, which nobody else has, because it's from 1973.

I often have to create space for Ellie to have social interactions with other children and little dance parties are the way to do it. She often deals with these friends on her own terms--making up little chase games, some parallel play (but she'll gladly accept play extensions now, even if it includes another child)....I don't expect any of my friends' kids to be Ellie's "best friend." That may not be possible for either of them. I would like them to accept her for who she is and respond with to her with sensitivity. The only way I can see that happening is activities likes this one, where the kids can snack, we'll blow bubbles for them (in the house!) and we can jam to some fun music. Ellie said repeatedly yesterday that she had fun. Who's to say she didn't? And that these experiences are training her brain for future endeavors in an inevitably social world?

The Second Gunman, NASA's Moon Soundstage, and Anna Nicole Smith was a Star

The special masters came back with a ruling yesterday that clearly states what a lot of us believe: vaccines don't cause autism. And still, the insanity that somehow, everyone involved in science is wrong and desperate parents who desperately want to believe that there is a connection are right continues today.

This morning I received a digest from a Yahoo! group I joined, National Autism Association-NE Ohio. Almost every posting in the digest was about "biomedical" treatments (bizarre diets, detoxifying your kid, super expensive conferences on wacky combinations of the two previously mentioned issues, the special masters' finding). I have to say, I just got totally pissed. Really. Those of us living with a child on the spectrum do not have the time to fool around with waste of time "treatments." So I fired off this letter to the posting administrator:

I believe I am confused about the mission of Autism Northeast Ohio. I thought it was an organization for promoting therapeutic information, scientific and pediatric care and options, and support for families. Instead I opened up today’s digest and saw that the first couple posts contain what amounts to a continuing and inexplicable dialogue about the so-called vaccine connection and an entire (expensive) conference on voodoo diets.

The question about autism and vaccines has, I believe, been settled. I know people want to believe there is a connection. There are also people who want to believe there are aliens living among us, that there was a second gunman on the grassy knoll, and that Anna Nicole Smith was a “star.”

We don’t walk around saying that going to college causes mental illness, even though the typical schizophrenia patient develops signs of the disease between the ages of 18 and 25, the time frame when a lot of kids go off to university. That’s just silly. Yet some insist on promoting this same fake relationship between childhood vaccines and autism. It is a waste of time and resources, both of which are extremely limited.

I would like to see more information about real therapy (music, speech, OT, play), more information about working with ASD children in their classrooms and communities, the ins and outs of the IEP process, more information about sibling relationships and the wellness of the whole family. In short, stuff that is based on vetted, refereed science and research. My daughter deserves to be supported with fact and truth, not suspicion and coincidence.

I would say that my email went over like the proverbial toot in church, because I got this back. I have inserted my own responses in bold. No, I didn't send these responses to the writer, because what is the point? She has an agenda and she really, really believes in it. But I want you to see what people like me are up against when it comes to defending science against, for lack of a better word, crap.


If you go to our website at www.autismnortheastohio.org, you will be able to read our mission, who we are and what we do. We do NOT endorse any of the varied therapeutic interventions for autism but support informing the population about them. We support and fund a variety of them, based on what the family that applies for support wants. We are not a clearinghouse of therapies. Therefore we will post information about a variety of therapies.

We applied for a grant to help with Ellie's music therapy. Probably won't get it now.

If you noticed, yesterday ot the day before I also posted info about upcoming workshops that we organize. The topics are varied from taxes to neurofeedback, special ed law, and biomedical testing. If I come across other resources such as workshops or articles about something relevant to autism, I post it too. And while NAA-NEO does some of the resource and article posting, we are also in the process of fundraising for families like yours, which is our main goal.

I'm not sure it is their main goal...I think their main goal is to push neurofeedback and biomedical. I have seen very little about special ed law lately, although they are trying to schedule an IEP resource meeting with Judith Saltzman, who practices SpEd law here in town. The bulk of the workshops are about gluten free casien free diet and immune system malfunction due to (you guessed it) vaccines. In short, voodoo.

Therefore I can only provide resources to the mailing list if I have the time or if I happen to see it someplace else and repost it. I we are unable to provide a balanced, scientific newsletter filled with the info you requested on a regular basis. I recommend that you join other groups for this type of resources on Yahoo or elsewhere, just go a search for autism, aba, autism and education, etc. as we do not specialize in any of these particular areas.

Is she admitting that their newsletter is unbalanced and unscientific?

I posted about the vaccines issue b/c I thought it was relevant because 2 cases were yesterday defeated in vaccine court, which is an establishment by government, deciding about the safety of vaccines for all, with overwhelming conflicts of interest. I personally think that is disturbing. One case in 2008, btw, won in vaccine court, which proved that that are some cases in which a predisposition (in that case mitochondrial dysfunction) could be a risk factor and once vaccinated, the child could become autistic (the Hanna Poling case). There is no one size fit all medicine or education for the the general population, but especially not for our kids.

Information about the Poling case is linked below. The ruling in that case is very narrow and probably will never be used as precedent in future cases. I do not think the special masters have a conflict of interest at all--they are looking at real science in this area as it relates to toxic torts and pharmaceutical malfeasance and they come to the legal conclusion that there is no proximate cause of injury and therefore no awardable damages. That's first year Torts at law school. Pirate lawyer friends, feel free to help me out here.

Last, please don't be disturbed by biomedical emails. If you don't want to read them, delete them. For many, many folks, biomedical brought better health, and in some cases significant improvement in autistic symtoms. Many parents want this information from us.
I am not to take sides here, NAA-NEO is not. We are supporting it all. But if this is too much for you to deal with, let me know and I will take you off the list.

I am not disturbed by them. I am angry that resources are being wasted on talking about an issue that is not an issue. The plural of anecdote is not data. Stories are not science.

Here's what I will say one more time about vaccines: they save lives. My husband, the intrepid geneologist, is helping out the LDS church by indexing their geneological records online. So many death recores he indexes from the late teens and early twenties are full of children's names, children who died from rubella, typhoid, meningitis, the flu, whooping cough--diseases we can prevent. Diseases we never have to see again, if everyone would stop panicking and just get the damn shot.

My kid may have special learning and developmental needs, but at least she won't die from the measles.

http://news.yahoo.com/s/ap/20090212/ap_on_go_ot/autism_ruling

http://content.nejm.org/cgi/content/full/358/20/2089

http://www.nytimes.com/2009/01/13/health/13auti.html?_r=1

http://www.newsweek.com/id/165644/page/1


http://blogs.discovermagazine.com/badastronomy/2009/01/17/alison-singer-autism-hero/

http://blogs.discovermagazine.com/badastronomy/2008/08/22/antivaxxers-must-be-stopped-now/

Cheese.

Here's an amazing update on what Miss Thing here can do that she absolutely could not do before.

1. Drink from a straw. Why is this a big deal? It's a fine motor skill, believe it or not, on par with being able to drink from an open cup, or blow bubbles, or air through a recorder. All of these things Ellie has mastered in the last 6 weeks. Her brain is on overdrive in this area. Thank you, Goddess Danielle of OT.

2. New phrases that pay:

Mom, will you play with me? (Yes. Anytime, anywhere).
Looks like Emma is upset. (Ellie was able to recognize the expression on another child's face and interpret it. Very difficult for kids on the spectrum. Some Asperger kids never do it. It's not intuitve for them. This also makes teaching empathy hard...we just need to model, model, model.)
I would not like to try carrots. (Okay then.)
Helen, will you play microphone with me? (Inviting another child to play in her space is not an Ellie thing. Interacting with other kids is hard work. But Helen got the nod, even above precious little baby sister Emma.)
I would like more cold water in my big girl cup. (You got it).

3. Ellie now can be gently redirected to another adult besides me for assistance. Before, if I couldn't help her with a task, it was throw herself on the floor, cry, run around. Now it's, Daddy, again please Gabba. No tears, no upset. Love it.

4. She knows, as in the photo above, that a smile is requested for a picture. She's really trying. She plays Funny Faces in the mirror and tries to see how her face looks in different positions. Again, not intuitive, but so, so valuable socially.

5. SHE HANGS AROUND THE KITCHEN AND BUGS ME TO ACKNOWLEDGE HER. You have no idea how great it is to have your child want you to come into her world when she hasn't done it for almost four years. I can't always drop everything but I sure wish I could. She is trying to carry on conversation--back and forth, turn taking, you go and then I go. The effort she is making is amazing.

What works? Therapy. Therapy. Lots of it. Hard work. Cutting out people who aren't supportive. Really knowing your child. It's all for this. These moments I have waited for all my life.

Look at me.

This is the kind of look we're getting all the time now. The focused, look at me, I'm really looking at you look. Here Ellie is doing something she loves--music--but she's also getting into that place where if no one witnesses it, did it happen? Emma is there now too--Bill must acknowledge every facet of Emma's day in order for it to have validation for her. Helen...well, she's just happy to be here.

I love this look. I love that Ellie can finally do it. I love that she does it for me.

What the what?

So I've got the flu and have been coughing up half my lungs for the past two days. Ellie is very concerned about my condition and comes to hug me whenever I have a coughing spell. Today, however, she was sitting at the dining room table eating grilled cheese and considering eating soup when I was on the couch languishing. Suddenly, I coughed_really_hard.

"What's wrong, Mommy?"

This is the first time that Ellie has been able to initiate a question, appropriately, about something she didn't actually witness (she only heard it, didn't see it, and she's really more of a visual learner). She doesn't do abstract. But she asked, so plainly, so definitely, that I cried. After I answered her, of course.

Bouncing and the elusive cup

American Bouncers did a special program for the National Autism Association - Northeast Ohio (NAA-NEO). If you had a special needs child, you could do bouncing (on the BIG bouncers) with similarly situated children and their families during Christmas break. Well. It was terrific! There were all different kinds of kids there (meaning kids whose needs were unique, from language to social skills to physical prowess) and from what I saw everyone had fun on their own terms. Our kids went wild for the bouncing....Ellie even taught herself to climb the "rock wall" bouncer and go down the 10 foot slide on the other side. They offered a nice snack room with the Wiggles on the big screen and no pressure for perfect behavior. However, I sure got it! My girls were right on target with listening and sharing. It was a joy to see them having so much fun.

www.americanbouncers.net

That being said, today Ellie drank from an open cup for really the first time. She has resisted the cup because (we think) she doesn't like the surprise sensation of cold water on her if she spills. However, today she was very confident and let Bill help her. No pics, of course. Emma applauded. This was success.