I have a 23 yr. old with Autism and some medical issues. Anything I seem to say is "controversial" or that I am too "emotional" to be able to think clearly about my child's afflictions like a "normal" human being.

We all have similar issues and some difference when it comes to Autism but, we all can agree that all of our children really need appropriate interventions, supports and accommodations to live in this world. The vaccination issue is just too much for some individuals to want to discuss or even deal with. I posted something about vaccinations on my Facebook page and was promptly shot down for it. Believe me, unless you live this life each and everyday, no one understands exactly what you go through on a daily or even hourly basis.

My daughter was toilet trained at the age of 3 but, in recent months when she becomes overwhelmed, anxiety ridden or abused (usually when she is in the care of others through our Waiver Program) she just started to poop in her bed during the night and leave it on her dresser for us to find in the a.m.

This has been and is very dramatic to say the least, especially for a toilet trained 23 yr. old. We never thought that she would ever be toilet trained when she was young and now pooping at night in her bed of all places? Our daughter is a clean freak and in the past, poop grossed her out. How could this situation start to happen? What is going on inside of her head to make her do this??? She won't tell us why.

There is always a reason behind non-compliance and issues as extreme as these are. When we were toilet training her originally at age 2-1/2, it turned out that our daughter was afraid of falling into the toilet bowl and getting flushed down (she also hated the noise of the flushing).

So we got her a toilet seat that fit inside of the regular toilet (it was cushiony) and that helped her feel "safe". As far as the "noise" from the flush, we simply talked her through it and worked on desensitizing her to noises. We also posted visual aides on the wall in the bathrooms (step by step instructions) and also, used a cute kid friendly video about using the potty.

But now that my daughter is an adult and she is doing what small children do. I find that there is NO HELP for our circumstances. Obviously, this is due to either extreme anger, anxiety or just being misunderstood for her wants and needs. She is verbal but has difficulty in expressing herself.

This Country really needs to look at the needs of our children and what those needs will be overall, as they mature and grow into adults. There is NO program or support that I know of which will accommodate our children's transitional needs and give them a better life. They don't stay children for long and adult needs are so much different than childhood needs - (medical, emotional, psychological etc.)I am overwhelmed, exhausted and completely frustrated, perhaps even more than my daughter is.

I appreciate reading the stories of others that have been posted here. Maybe one day there will be a solution for all of us.

We are all here as we have sick children- autism, adhd, seizures/tics, allergies, asthma, immune/mitochondrial dysfunction and cancer. It has been reported just this week here http://www.sciencedirect.com/science/article/pii/S1876285910002500 that over half of the childhood population suffers with serious illness. Suffers......eating, sleeping,
breathing,communicating,toileting,focusing.....living. That is reality and I just find it hard to believe that some posters here are able to ignore that and instead call me a bully? Please look at the children and those yet to be born -- they are also why we fight.

Eileen,

"I want to help my kids NOW, not just prevent future cases of autism. Therefore, I reject the myopic tyranny of anti-vaccine fanatics. There is more to the world of autism than that."

Agreed. You said it perfectly. There's SO much more to autism than vaccines and that's why the more voices (such as yours) there are in this discussion, the better. I also agree that the bullying and insults have to stop. That kind of unproductive behavior will eventually be the undoing of all the efforts to secure education, support, and eventually a cure for our kids. A lot of people in positions to help already don't listen. Will the backbiting and insults somehow persuade them to listen? And what about the few and far-between who do listen? How long will they take seriously a disjointed community that's fully engaged in a civil war over whether it's the vaccines or not? We come off as crackpots to the majority of those who are in a position to help. And it's not because of the science. The science is solid. Yes, there's room for debate on both sides and both sides have questions that should be persued in the spirit of solving the problem rather than proving who's right. But by and large, the science is solid. The reason those in a position to help don't listen to the solid science is that the community presenting it, our community, is not a united front. We scream and we holler and we hurl insults and are generally viewed as petulant whiners engaged in an on-going temper tantrum. Yes, we are angry and frustrated and upset and we sure as hell have every right to be. However, succumbing to that anger such that we turn on ourselves and each other will not accomplish the goals of the autism community. It will shatter those goals. I'm not saying to give up, far from it. I'm saying that we need to stick together and present a strong and steady front and we need to keep the world's attention focused on the science. I think it's the only fighting chance our kids have.

Eileen, you are a common variety here, the passive aggressive AofA reader. And yet you keep coming back to poke the bear with a velvet stick. It's not bear season right now though.

Kim

Eileen, nobody is presuming anything about how hard you work for your child. Nobody knows how difficult your life is nor how the level of difficulty compares with anyone else’s life. Teresa is not a bully, and her focus is not negative and angry. Your focus, on the other hand, is negative and angry. Your comments focus on maligning others as well as feeling insulted when nobody is insulting you.

We all want to help our kids now.

If you don’t like this blog, why do you read it? Go read some other blog where they don’t write about vaccine injury.

Dadvocate, this is how I sometimes feel these days:

On the one hand, there are those of us who believe that vaccines are one of the major causes of autism – probably the main cause of the huge increase in autism over the past 25 or so years. The reluctance of our government and mainstream medicine to admit to this has resulted in failure to address root causes and to find effective treatments. Some children are being recovered from autism with alternative biomedical treatments, yet these treatments are ridiculed instead of studied. Among the vaccine/biomedical community there is, understandably, a lot of anger. Sometimes this anger spills over in ways that IMO are not constructive, and are alienating to some people who might possibly be willing to listen.

On the other hand, there are autism parents who don’t believe in vaccine causation or biomedical treatments. I’m not talking about villains like Dr. Offit and Orac, but about good hard working parents who love their children, advocate for the very best education and therapies and recreation, and are now becoming involved in advocating for adult services, employment, living situations. I don’t understand why these wonderful people are so close minded when it comes to vaccines and biomedical treatments. I have total respect for someone who has tried the GFCF diet and found it did not help their child; but I can’t understand someone whose child has GI and behavioral issues and has never tried dietary intervention. I can’t understand Autism Speaks not getting involved in study and advocacy in relation to vaccine issues. Sometimes I imagine a huge wall – either a glossy smooth blank white wall as hard as stone, or a marble wall. No matter how much anyone throws themselves against that wall, there is no dent, no response. Just a hard, cold wall.

Lately I hear people say that we should focus on common ground. Someone said that the federal government wants us to get along and present a united front instead of infighting. I responded that the federal government has the responsibility and obligation to address problems in the vaccine program, to make that program as safe as possible, regardless of whether the autism community is united or fractured. Focusing on common ground is indeed a wonderful goal, except that the implication often seems to be that we simply drop the vaccine/biomedical issues so that we can focus on advocating for services.

One of the problems with that is that if we continue on the present course, with autism, ADHD, bipolar, and a host of immune system disorders constantly increasing, we won’t have enough employed taxpayers to fund all those services, no matter how much we advocate.

And the vaccine issue should not be compartmentalized into some separate dimension. It is related to so much else. Recently a study claimed to have found signs of autism in babies aged 6 to 12 months. This was celebrated as a way to identify babies in need of early intervention and start early intervention even earlier. It seems to me that what should also be looked at in relation to these babies is whether they have shown signs of vaccine reactions, whether they should consider an alternative schedule or moratorium, certainly approach vaccines with great care. And, do they have medical issues which should be addressed? GI, mitochondrial, oxidative stress, inflammation…?

When you, Dadvocate, point out the parts of AutismOne that are interesting to you, and completely ignore the biomedical topics which are so central to, for example, Teresa, you think that you are being friendly and sharing, but you are actually being like that hard blank wall. That is the context of your comments. I don’t think Teresa was attacking you when she said “silly you forgot all the medical issues being discussed...” and “Turning your head and being such a good sport about kids being injured by vaccines seems to be a freaky skill that you have.” I think she was saying in a straightforward and reasonable way that you can’t just ignore her reality (which is shared by so many others too) and expect to get a positive response. Have you read her daughter’s life story, and all the issues that Teresa deals with including seizures? You can’t expect her to react calmly when you present that wall. She has worked so hard, studied so much, to better understand her daughter's severe health issues, of which mainstream medicine has barely scratched the surface.

You are to be commended for your advocacy for adult services and research. It takes all kinds to make the world go around – there are many kinds of important work to do – not everyone has to be involved in biomedical and vaccine advocacy – we all come to different conclusions and need to respect each other’s differences. Still, you need to acknowledge that many parents have experienced their children’s vaccine injuries and ongoing physical health issues which in many cases have been treated more successfully with alternative medicine than by mainstream medicine. That may not be your reality with your child, yet it is real.

ConcernedMom said, “We don't really know who is right because a cure hasn't been found yet. Once a cure has been found, then we will know who's right. Until then, the discussion must continue with different comments, contributions, ideas, and approaches because the more we have, the better the chance of finding the cure.” I don’t think we will ever find “a” cure for autism – not one single cure that works for everyone. But there are some people with autism who have recovered with treatments. So “cure” for some people with autism has indeed been found already. I know kids who have recovered from autism. Dr. Robert Sears says in the Afterword to “The Autism Book” that among children with autism who receive comprehensive biomedical treatments and behavioral therapies, about:
- 5% will lose the autism diagnosis, become neurotypical, and not require ongoing specialized treatments to maintain recovery,
- 25% will reach this same level of recovery but will require ongoing treatment to maintain it,
- 30% will show dramatic improvement but will still be autistic
- 20% will show modest improvement, and
- 20% will not seem to respond to treatment at all.

What a shame that so far we don’t know more about which treatments will work for particular children, yet amazing that some effective treatments are known.

I agree that “discussion must continue with different comments, contributions, ideas, and approaches”. I feel that often the non-biomedical side of the autism community is so convinced that they are right that they don’t listen and don't even want to discuss. Cooperation involves more than finding common ground. It also involves understanding what is most important to the other side.

I don’t know whether I am being clear or whether this all seems like it is just meandering...

I guess what it comes down to is that a hard blank wall is not better than anger, and vaccine injury is a terrible problem which must not be ignored.

Dadvocate-

Well, it appears you have missed the boat....using your fly fishing analogy. You comment here, a post about GI issues, vaccines, family trauma and the epidemic numbers of autism cases yet you bring up "a drain in the bathroom floor"...? What was the point of that except to detour the conversation back off of the huge issues of vaccines causing autism?

You are taking the tragedy of autism ie vaccine injuries and are ignoring major components and I would say in a denying and obtuse fashion .."I am not familiar with much in the way of glee regarding autism." Glee?

Of course housing is an issue but posting about drains in the bathrooms of severely ill children who have been vaccine injured is an insult to all of the families dealing with this unbelievable and painful world for their children. Your lack of understanding that those "fellow travellers"..... "OCD anxiety depression rage etc"...are being incorrectly classified as "comorbid psychiatric" when they are part of a whole package of medical illness and for most readers here and many of the children with an autism diagnosis, are direct hits from vaccines.

Lastly, I'm not sure why you are calling me "T". I don't see you doing it to any other posters so respect my full name.

Dadvocate

I have I think two linked points here. I have taken it as your long term concern that AoA readers have greater trust for Autism Speaks, and of course I too would love to think that we had a great and powerful organisation like that genuinely committed to our children's interests. This is why when I doubt its motives I address the question to you, I would actually like AS to address them, and since you often act as advocate for them (however unofficial) you may be the next best thing. And as it is I see you have passed on the publicity given to the Kim study.

While also accept the imaginative possibility that psychotropic drugs could help a great with autism (and without high levels of risk) I have to admit I would like to know a lot more about it before abandoning my caution and my scepticism.

John - I'm a fly fisherman so know not to rise to the bait, but, since I think your heart is in the right place, here you go...I am not familiar with much in the way of glee regarding autism but welcome pharmacological research (and therapies)because some (many?) people on the spectrum suffer greatly from often debilitating conditions like OCD, depression, uncontrollable rage, self injury, injuring others, etc. Helping these people (who are our kids, brothes, sisters, cousins) achieve a better quality of life doesn't mean research in other areas to help prevent more people from being affected by ASD can't take place. Ignoring their obvious needs in a single minded quest for a cure isn't in my DNA. I don't believe in writing a generation off.

As for the Kim study, I don't know much about it and pay little attention to individual studies anyway, especially "incidence" studies. If you think AS is using it as a marketing tool that's their business and you're free to protest loudly and widely.

T - You may want to go a bit lighter on the ad hominems and inflammatory language like "silly" and "freaky". They tend to undercut your arguments and irritate people like me who helped fund (more than a decade ago) a large population longitudal study that for the first time identified eeg abnormalities, seizures, and epilepsy in 60% of the ASD population. It was ignored at the time but is always cited now. It appears that a few folks are finally jumping on the bandwagon which is I guess OK. I hope it leads to more widespread use of 24 (not 3 or 8 hr) eegs, which, while still dismissed by a lot of mainstream types are stongly recommended by Autism Speaks, as are GI investigation and treatment, when suspected.

I spend most of my time now focusing on transition and adult issues so pointed out what I thought were a couple of interesting sessions at AutismOne in that category. You know the 50+ years that come after the first 20 with those "nuisance kids". I thought you and fellow readers would appreciate the comment...but apparently I was wrong.

Christianson;
I do not know how old you are, but I remember when you could walk across a few rivers, the Great Lakes were dead, esp Lake Erie. Chemical companies, sewer of cities, and who knows who else thought nothing of using water ways to get rid of their waste. Cars now have platinium (most expensive stuff in the world, even more than gold) in catalitic converters, and there are tall chimneys that give plenty of time for smoke particles to fall back down as they cool. They now additionial have scrubbers in tall chimneys of coal burning electric companies, so all that gets out is carbon dioxide the same stuff you and I breath out.
Chemical companies that make pesticides are regulated by the EPA. All chemical companies have environmental labs and they test the pesticides before using them on at least seven if not more generations of rats, mice, rabbits, chickens, rainbow trout fish. They also test different concentrations of the pesticide or what ever on these different spiecies too. They test live speicmens neurologically, and take blood samples. They then at a certian time kill these animals seperate all their organs and all their body parts, and put them in jars to keep them till the moon turns to blood, and Jesus Christ comes back to claim his throne on Earth.
Landfills, is a science unto itself. They look for areas that have natural non-porous clay bottoms, always away from streams, they now lay layers upon layers of other materials down before they accept trash. They burn what they can, they spread it thin, put dirt on top of each layer, and stick pipes in so methane can escape. None of this they had when I was a child by the way, but when they started cleaning up the rivers, the lakes, the air, the dirt, the country - then we started seeing rises in autism???

That does not make sense?

I told the NIH, CDC, the doctors, my Congressmen, the people who teach at the medical universities, who ever I could write to or would listen as far back as 1987 what I observed, and that was both of my kids running 105 temperatures, passing out, gasping for air, having strokes, having inflammed heart valves, Kawasakis, right after a DPT shot. But that was just my two kids and nobody elses so why listen to me.

If we are not careful---- they will - because they are wanting to, looking to do it, squirming like a bunch of snakes to get out of trouble - look for every environmental thing under the sun including cow farts, and human being sighs --- untill about the same time the environmental labs of chemical companies throw out their specimen jars - which will be about the time Christ comes back.

A Christianson

Surely:

http://childhealthsafety.wordpress.com/2011/05/20/gm-toxins-unborn-babies/

My son with autism is about to turn 30 years old. I remember times like the one you describe. I can laugh now, but was in frustrated tears then.

Take a deep breath (outside) and keep going. It should get better soon.

Kathy Henley
Portland Oregon

Dadvocate-

We at least agree on the rural adult housing issue. Are you attending Autism One by chance?

Thank you so much for sharing this experience, Lisa. I hope you have found some comfort in the heartfelt responses from so many parents who have also experienced terrible "crapisodes".

Our son went through a poop smearing phase when he was about two. I would try to keep him in coveralls with a couple of layers to make access more difficult, but he was like Houdini. We would listen for the sound of him waking up from his nap so that we could rush in before he did his mischief, but often to no avail. What finally ended it was that my husband lost his cool and yelled at him really really hard. I felt terrible at the time and reproached my husband, but our son never smeared poop again. I certainly don't recommend yelling, and I certainly don't believe yelling would work for everyone, just sharing our experience. Later when I would hear about complex behavioral management programs, I would remember how our son was cured of poop smearing and it struck me as humorous, in a dark way. We rarely yell at our kids, but this was one occasion that drew forth that very loud decibel, probably hurting his hypersenstive ears, poor thing. So glad those poop smearing and diaper changing days are behind us. Someday, one way or another, they will be over for you too, I am sure. In the meantime, good for you for cleaning and writing and screaming a little and persevering. Things will be better.

Those without special needs kids, just can't possibly imagine. I somehow trained myself to keep my children within my sight every second. How is this possible? I don't know, but it just had to be this way. I used to be only able to spend 20 seconds in the bathroom because anything longer would allow time for a catastrophe. I don't know how I managed. It was a struggle to get through every second. I didn't even have time to cry.

Please go to thoughtfulhouse. This is very similar (though worse) to days in our lives with our now HFA child (who at 10, still won't poop in the potty but it only takes about 5 minutes and at least he goes in his underwear)

But it is so much better now. Our life was hell and I think it is a PTSD thing. He had been GFCF for years. Helped. But not enough.

We took him to thoughtfulhouse, had him scoped, did SCD, did LDN, did meds with Dr. Krigsman, (did not do propylene glycol for cleanout though) did all the typical things, everything BUT chelation. the bottom line is, he finaly mostly healed. When relatives can't believe I'm not freaked out by his pooping in his undies, I simply can't explain. but now I'll send them your story and say "I'm not freaked because it used to be like this". I went through a box of clorox wipes and 80 kid wipes a day cleaning up the bathroom. He only splattered all over the bathroom not the rest of the house, by the grace of God. He splattered DESPITE his undies because it was explosive and awful. I too had moments of total total despair. Despair so terrible I gave up having despair. It was useless. I didn't fully feel this until it is now almost just a bad memory. I lived in a fog of denial or I would have had to jump off a bridge. Denial a good thing. We didn't even have to deal with other rooms like you did, or a second child witnessing this hell . . . our perfectly healthy chidlren developed alzheimers. that's all you need to know if you've ever dealt with alzheimers which also causes hideous bowel issues in some . . . The only saving grace is it can be reveresed with some of our kids. . . . for mine he is now doing very well and you would almost not know he used to be sent home evry day from kindergarten for banging himself against walls (pain in his abdomen that was called a behavior) and for running around like crazy (I think after playdough and he was GFCF but I ran out of energy begging the school to get rid of it because he never slept so neither did I). My heart goes out to you. Please try to find a gi doctor who will listen if you have any time to think straight.
This story is why Dr. Wakefield is my hero. His research saved my son. My name is not posted here due to my son's fathers wishes but if you write the editor, she has my permission to give my email to anyone who thinks I might be helpful. There was also a story by a woman at one of the autism events about how SCD saved her from jumping off a bridge with her autistic son who was about to be institutionalized . . . . he was in severe pain. but it's so so hard to do sometihng as drastic as that diet if you are dealing with a child who auses laundry and health issues all day. If only this were accepted medical practice as it should be you could get help from the community with the meals. But I will bet you are practically a shut-in, right? When my son was in this mode, I could rarely leave the home. Isolating. Depressing. Overwhelming.

Shana, if you don't want your baby to receive the hep B at birth, DON'T LET HIM OUT OF YOUR ARMS ATTHE HOSPITAL ONCE HE IS BORN.

My second child was given the hep B while in the nursery while I was in the shower--against my clear written instructions, and without my consent. Our pediatrician (who supported my wishes) was not in the hospital at the time; the nurses took it upon themselves to vax him.

Lisa,

Good job cashing a reality check in large bills on the autism epidemic. I'd be scare to death for the arrival of our next baby this july if I didn't have every confidence that autism is a diease of toxicity usually compounded by a deficient diet. Therefore a lot can be done to prevent it and a host of other problems. The peds docs need to get a spine and start questioning what they've been told. Anyone who'll do that I'll stand behind you and won't blame you for what you didn't know. Eyes see more clearly when they've been washed with tears.

T - Don't know Ring but am OK with the AS translational research initiative. There are way too many people with ASD who have no where to turn when dealing with fellow travellers like OCD anxiety depression rage etc. If this guy can help drug companies focus on providing better pharmacological interventions for those who need them that's fine in my book.

This initiative has zero relationship in my view to the effors of Ne'eman and his neurodiverse group who basically say "no research or interventions are desirable...accept us as we are" and "the only needs that ought to be considered are the ones we tell you" so I don't see that a line needs to be drawn.

While I get along very, very well with a number of autistic adult self advocates and support many of their initiatives, especially on adult issues(and have for years), Ne'eman doesn't fall in that camp. As much as folks criticize AS for not playing well with others, ASAN is incapable of compromise on virtually any issue. I opposed Ne'eman's appointment from day for that reason (and many others)and am sad to see my worst fears being realized. One needs only to look at his Board to see that they do not appear to appreciate or value the needs of the non-verbal or non academic or non-Asperger's in our community. for all their carping about inclusiveness, people in glass houses...

Dear Dadvocate,

It is refreshing to see you get riled up about Ari. How do you feel about... "Robert H. Ring, previously a Pfizer senior director, will join Autism Speaks in Princeton, N.J., on June 1 in the newly created position of vice president of translational research. His focus will be on helping move drug experimentation from laboratories to clinical trials.".....

Just wondering where you draw that line?

PS- I live in IL and know all about no help here and am a big advocate for rural autism communities,,,,,

Thank you for sharing, Lisa. I am so sad for you and your son, and I hope he will be able to improve with your help and research and hard work.

This is autism, and it is all too common, but I guarantee it is not 1 in 38 (yet). Those numbers are an attempt to make autism seem like not such a big deal.

On a side note, (my tiny attempt help) have you heard about VSL #3?
http://www.vsl3.com/
It's the most powerful probiotic I've ever tried. Recently I had been having tummy troubles for about a week. Then I took 2 packets of this before bed, and I was all better. They say that up to 8 packets can be taken per day.

Thank you Lisa for helping the ignorant by choice world see what needs to be seen. My brother, now 65, was one of the first casualties. Our mother reports not being able to wear her rings (metal sensitivity), extreme stress during pregnancy with him. He is now short of stature (consequent to poor assimilation, weak intestines), and aware that gluten, other foods throw his gut into chaos, but eats what he wants anyway. His living habits exhausted my parents as he and his obsessively collected trash metastasized filth throughout the house. His inability to eliminate toxins was evident throughout childhood as he literally stank all the time, not due to lack of bathing. "Shaken Baby Syndrome", a term that instantly connects presumed cause with severe bodily bruising, has readily been accepted by the medical community, and used to further persecute families of children damaged by vaccines and other medicinal mismanagement. Meanwhile the CDC & pharma persist in denying autism as a convergence of intentionally injected toxins, metabolic insufficiency, additional toxic load with concomitant inability to eliminate them, gut dysbiosis. So many other diagnoses are based on x out of y signs and symptoms. Why does the CDC insist on complete convergence in this one issue? Because it might shine the light of responsibility on the CDC and its revolving door pharma buddies. The other situations lay the blame elsewhere. The Age of Autism by Dan Olmstead & Mark Blaxill is worth reading. The only way we'll overcome this manmade epidemic is by speaking up, claiming control over our bodies (not via conventional medicine) and insisting on clean nourishing food and healthy (start w/ pollutant free)environment. Blessings on you for your work. Karen L

Lisa

Interesting how almost simultaneously we both came up with pieces which had the phrase "new normal" in the title but with quite different ironic slants. I believe it reflects how some professionals are deliberately creating utter confusion. So we find our problems both swamped with probably spurious data, and trivialised. We need real solid perspectives not public relations "paradigm shifts": thanks for giving us yours.

John

Lisa - You'd better not put a drain in the bathroom floor lest you incur the wrath of Ari Ne'eman and gang and disqualify your child from HCBS Medicaid Waivers (not that they are all that available in IL). Homes with specific designs to accomodate disability are not "community based" according to the new proposed Medicaid regs. His ASAN crew (and their ivory tower academic enablers) have lobbied long and hard to promote a very narrow and radical interpretation of Olmsted and define what housing ought to be for adults with autism. Their "community based" view seems to mean living alone.
Read the report if you have the stomach for it:
http://www.autisticadvocacy.org/modules/smartsection/item.php?itemid=142

A lonely existence in a trailer park? OK! Group home or campus of over 4? Forbidden! Agricultural or rural community? No way. All disabled folks need to live alone in cities whether they can become equal opportunity crime victims or run over by traffic they're unable to navigate. Non-verbal? Severe behavior issues? Risk? Here's their take:

"Risk: We are supported to take risks, even if others don’t approve. It is not a big deal when one of us makes a mistake."

http://www.autisticadvocacy.org/documents/KeepingthePromise-SelfAdvocatesDefiningtheMeaningofCommunity.pdf

Right.

By the way, rural folks are segregated whatever their circumstances! ASAN knows best! No one with autism should be allowed to live outside a big city.

If you, like me, are outraged with these proposed regs, you have the chance to comment to HHS by 5pm June 14, just like ASAN and others have done:
http://www.federalregister.gov/articles/2011/04/15/2011-9116/medicaid-program-home-and-community-based-services-hcbs-waivers

This kind of stuff is exactly why Ne'eman is unsuitable as a broad representative of our community. I expect if confronted he'd prevaricate and say, "It's not mine, it's ASAN's view" but, please...

My generous side says to leave it be because for many with Asperger's syndrome, the inability to see issues from other perspectives is part of their disorder, but when it affects my kid's future prospects and well being, I have to draw a line in the sand.

Lisa,
Thank you so much for sharing your intensely horrible experience with others. I am one of the lucky ones who only had to deal with one "crapisode." It occurred when I was taking the time to walk my crippled father (who had Parkinson's) to the bathroom. In the time it took for me to walk my Dad to the bathroom, wait for him to pee, and walk him from the bathroom back into his chair in the kitchen, my then 2 1/2-year-old son had removed his crap-filled diaper and smeared feces on the carpet in exactly 17 places. I was beside myself. I didn't possess a steam vac at the time. I sure did purchase one afterward. I will never look back at that day and laugh. There is absolutely nothing funny about cleaning up after an event like that. But as I only had one such event (which was relatively self-contained) to clean up after, unlike so many other parents of affected children, I feel I have absolutely no right to complain about it, either.

A crapisode (thanks for the vocabulary to describe it, KS) is something no parent or child should have to experience. There is no reason for it. Medical doctors need to get their you- know-what together to help our children. Our children have very real gut problems that need correction.

I want to thank you, again, Lisa, for making those wonderful cartoon videos. I have forwarded the two I know of to family and friends. They are factually correct, and present the information in a fresh, compelling and interesting way that no one else has attempted. You are so very creative and talented. I wish you and your family every possible success, especially Noah.

Raw and truthful. I am so tempted to forward this piece to the AAP, CDC, Sebelius et al. so they can feel what our lives are like and the damage that has been wrought in part by their arrogance, denial, detachment and craziness. I want to rub these tour de shit stories in the faces of the denialists who have let this happen to our kids.

I recently had a crapisode awaiting me after I took a mere hour and half off to buy a birthday present for my nephew while my sister watched my son. Somehow in the short span of time all hell broke loose. My son started hitting her so she locked him in his room. By the time I got home, I was greeted with feces smeared all over the bedroom floor, walls, comforter. It stunk. My sister was freaking. It took me 2 hours to wash everything and cleanup the mess.

I am so tired and numb at this point that I don't even react anymore b/c I feel I need the conserve my energy. Nothing phases me anymore. I have lived this nightmare for so long that I feel like a battleworn soldier looking over this feces strewn landscape with a thousand mile stare. Instead of a gun I carry a mop, take a deep breath and soldier on.

My son Noah, was diagnosed at the age of 2 and 1/2. He did have all his vaccinations. We are lucky that we don't have explosive bowel movements or the one's that are so backed up it comes out the size of a softball. We don't do GF/CF, we try to do all organic, but are yet to be 100%. His Early childhood teacher claims he is more neurotypical than he is autistic. I am wondering if just him being able to potty "normally", has helped him come so far? I do feel very lucky, he is 5 and has been completely potty trained for a year. The only time he wet the bed was when he was constipated. The doctor gave us a "laxative" and he hasn't peed the bed since. I am pregnant with my 2nd child, and worry constantly about Autism with another child, but you can bet this child is not getting the Hep B just after birth... I already signed the paper. I pray that your little Noah will get that cure that so many are looking for. And thanks for sharing your story, I learn a lot reading stories from other parents who deal with this horrible monster called AUTISM.

Thank you for sharing this story; on a personal level it made me cry because this is something I deal with, mostly alone. Hell, a crapisode is exactly why I had to leave the ARI conference early after waiting 2 years to go because my husband just can't deal with them, and I have no choice. Maybe if Autism Speaks made a PSA depicting stories like this one I would support their awareness campaign. I really don't think people who are not dealing with this side of autism in their lives, through direct or shared experiences, understand the desperation of families like ours. It is so easy to debate these topics rather than take the time to figure out why "anti vaccine" (or pro safe vaccines) parents are so angry and feel so betrayed, and why they are so passionate about this topic. The only thing worse than having to live with this is knowing about it and standing by without doing something to warn others so it doesn't happen to them. It's a shame that the same concern isn't often shown in return.

Lisa,

My heart goes out to you. I have cleaned poop from my son's teeth and hair, from the VCR and bedding, even washed the "shit alphabet" off walls. Our son is 14 now and because we left Minnesota for his G.I treatment, he finally is 90% potty trained and his gut issues are slowly getting better.

As with Noah, our son is the sweetest, tenderest young man when he is comfortable. When he is not, it is because his small bowel motility is glacial, and he backs up the most unbelievable quantities of stool. Crapisodes I can handle. The complete destruction of my home and property, thats all good. Watching your beautiful child clutching his stomach and cry out in pain so terrible he cant even get up to hit you or bite you, knowing there is nothing you can do, nothing you can say to help him, is the worst. His eyes, pleading for relief and me sitting there totally useless to help. And this used to happen nearly every day, for years.

I have anguished and cried when I deal with people who do not understand why my son behaves "badly". But my real anger is not with God, or my misunderstanding friends and family. It is with those who ignored and attacked Dr. Wakefield since 1998. If they had listened to him, There might have been a more effective treatment, a tool, at least a Goddamn plan, on how I could help my son and his debilitating gut pain.

Thank you Lisa for sharing your (our) story.