Jenny McCarthy , The View and the Uncalled for Backlash

Since when did it become appropriate to permit an individual’s personal opinions to impact their ability to obtain a job?  Especially when said job is on a talk show aptly named “The View”???

There is a huge backlash going on in case you missed it, because Jenny McCarthy has been hired as a new permanent host on The View. 

http://social.entertainment.msn.com/blogs/post--jenny-mccarthys-view-hiring-blasted-as-public-health-threat

People have these types of comments:

"I think a network hiring a homicidal maniac, giving her a forum in front of people who have young children and are impressionable, is the most irresponsible thing I've heard of in a long time," New Yorker writer Michael Specter rants to the Los Angeles Times. "She's very dangerous. It's unfortunate that in our society, scientific evidence is now just taken as some other point of view." 

"Congrats ABC for hiring vaccine crank Jenny McCarthy for her 'outrageous... fresh POV,' [because] actual medical science is so stale and dull," fumes Time magazine TV critic James Poniewozik, who took issue with Barbara Walters' statement that Jenny "can be serious and outrageous. She has connected with our audience and offers a fresh point of view."

Salon takes a harder line: "Dear ABC: Putting Jenny McCarthy on 'The View' will kill children," blares its headline. "The vaccine conspiracy advocate doesn't just have a quirky point of view, she is spreading lies that hurt people."

Adds a pediatrician to the Boston Globe, "By choosing Jenny McCarthy to be a host on 'The View,' ABC made a decision that could end up costing lives -- even worse, the lives of children."

Now, I have my own “views” on vaccines, which I have shared plenty of times.  I think people are being extremely melodramatic about this.  To say that she will cost children’s lives is akin to saying that because a talk show host is prochoice, more abortions will occur. 

I do not agree with Jenny McCarthy’s simplified philosophy about all of this- aka autism, vaccines, nutrition, etc.  She does state that her son Evan is “cured” of his autism.  And I have heard stories of other “recovered” children.  The bottom line is that her son’s “recovery” was due to dietary changes, infusions of glutathione, B12, and intensive therapy.  I know this because I read her book.  It all goes back to the idea that children with autism have an impaired ability to rid themselves of toxins, which like or not, vaccinations do introduce.  But they also come from many many other sources, and even if, as she claims, the MMR vaccine was his tipping point, it does not mean it “caused” his autism.   That is why I am pro spreading out vaccines, not stopping them. 

For all we know, ABC has made her sign an agreement that she will not discuss this on the show.  Even that would be pretty crappy in light of the fact that we are in the U.S. and plenty of other hosts have certainly voiced controversial opinions on this show. 

You know what I think is irresponsible?  Parading the current popular medical opinion out to the public as fact.  There are far too many changes to these theories on a daily basis for me to buy the idea that the medical community as a whole knows what they are doing.  Especially as it pertains to autism.  I have been presented with so many ideas/theories/treatments since the boys were diagnosed that it makes my head spin.  It made me really mad to read these quotes.  Not because they are definitely wrong, but because they assert that the larger medical community is without question, right.  And I think that the jury is definitely out on that.  I base this on Johns Hopkins’ study of mercury’s effect on the immune system, and the more and more widespread acknowledgement that autism is in part an immune modulated disorder.

http://www.nytimes.com/2012/08/26/opinion/sunday/immune-disorders-and-autism.html?pagewanted=all&_r=0

Just some food for thought….

If autism is related to immune system dysregulation, is it really such a huge stretch to consider the idea that maybe, just maybe, multiple injections of substances that are meant to activate the immune system of a typical individual (vaccines) could possibly negatively affect that of an individual with a genetically impaired one?

And if one considers this possibility, is it really appropriate to label her as a “homicidal maniac”?  I think not.

Thank You For Stimming

What a freaking day.

I took the boys to see their developmental pediatrician today, which is always a treat.  Don’t get me wrong, I like him, it’s just always overwhelming, discouraging, enlightening, hopeful, and depressing all wrapped into one. 

For Jack it was more of a “tune up”; try these supplements, let’s get a few more tests, progress is there and we’re happy.  Not to poo poo it, because there were significant changes to be made, but it was all stuff I can handle.  And we also don’t want to make too many changes right now in light of the study.

Nathan was a different story.  I pretty much laid it all out for the doctor (mind you, this is a two hour appointment, not your typical doctor’s visit).  I continue to be extremely worried about Nate’s lack of progress.  I am worried about language and skills, but most importantly right now I am worried about his stimming.  How frequent it is, how intense it is.  I mean we don’t even notice some of it anymore because it’s just the norm- the lap running, the waving things in front of his face, the humming, and the repeating of sounds over and over again.  The constant need to be squeezed- arms, legs, sometimes head.  And I have described this before in these appointments.  But Nate hates any doctor’s office and usually curls up on my lap.  Today he seemed to relax a bit- he’s been to this office a lot now, and he got restless after we were in that small room for a while.  He got down; he ran his laps, made his sounds, waved his fingers.  The “full Monty”.  And the doctor saw all of it.  You could see his level of concern growing as he watched- as were the number of recommendations he was writing down.

One of the things he said is something I have been saying all along.  This just feels like yeast- the stimming, the grainy poop (sorry), the crazy laughter.  The fact that he improves on nystatin but then immediately reverts to his old behaviors when it’s stopped.  All of these things point to yeast.  Not to mention that this issue tends to crop up in kids (note that these kids also have a genetic predisposition to this stuff) who are on lots of antibiotics when they are very young, and also on nebulizers.  Yes, Nate was on both.  Repeated upper respiratory and ear infections.  Lots of wheezing, which has since resolved.  The antibiotics kill off all of the good bacteria in the gut and leave it vulnerable to yeast growth.  Repeat this multiple times and you could have a real mess on your hands.  That’s where the doctor thinks we might be.  If I could offer any advice to parents of little guys (and I usually don’t dispense advice in this blog) it would be this:  put your kid on a probiotic.  They have powdered ones you can mix in with breast milk or formula or even water.  Give your little one the good bacteria.  It’s a relatively cheap way to prevent this yeast overgrowth.  Our world is TOO antibacterial at this point and I really believe it is causing more harm than good.

Long story short, the doctor wants me to send Nate’s urine for amino acid testing.  The results of this testing show if certain byproducts of yeast or clostridium (another chronic gut infection) are present, and thus confirm the presence of the issue.  There are few direct ways to test for this, but this is one of them.  Of course this is not covered by insurance.  We have put it off and treated empirically for suspected yeast.  It’s time to bite the bullet and send off a check for $300 to have my kid’s urine tested.  It’s just time.  So he has his specimen collection bag on tonight- plus two diapers and zip up pajamas and tomorrow FedEx will pick up his pee (still makes me giggle).  Once the results are in we will use them to guide our next steps- likely stronger probiotics, a stronger round of fluconazole, flagyl if needed for clostridium. 

The other step we decided to take today was to start a “mitochondrial cocktail” for Nate.  This sounds scary somehow right?  But really it’s just a certain combination of supplements that help Nate’s mitochondria to function better.  Apparently some of Nate’s more recent lab results have been pretty indicative that this is a problem for him.  Here is a little more info on what that means:

http://mitochondrialdiseases.org/autism/

What is the role of mitochondrial dysfunction in ASD?

All ASD is not mitochondrial disease. However, mitochondrial dysfunction has been found repeatedly to be prevalent in this group of children and adults. The brain and muscles require a tremendous amount of energy to function normally. Deficiencies in the ability to fuel brain neurons – as may occur with mitochondrial dysfunction – could lead to some of the symptoms of Autism.

 

Because mitochondria make ATP, as well as perform vital cellular tasks, mitochondrial dysfunction can result in less energy available to fuel the high-energy needs of the brain and muscles, and also leave free radicals in the system where they can cause damage. Overall, there is a large and growing body of research showing that individuals with ASD often have significant mitochondrial dysfunction, which may be a cause of, or contributing factor to, their development disorder.

So here is what the “doctor ordered” (before reading take a deep breath- I know I have to):

Carnitor 3 tsp 3x a day

Ester C 1000mg 2x a day

Vitamin E 400 IU 2x a day

Bcomplex 100mg 1-2x a day- B1, B2, B3, B6 (already gets B12 injections)

Alpha Lipoic Acid 1000mg 3x a day

Biotin 10mg 1x a day

saccharomyces boulardii (second probiotic)

and continue everything he was on previously

And to be honest, there are 2 more that I, the nurse, cannot decipher due to his chicken scratch so I will have to call the office about those. 

Can someone explain to me how on earth I am supposed to get all of this into a child who doesn’t swallow pills??  Seriously?  I decided to experiment with different substances to mix these with this evening- thus far he has rejected almond butter, chocolate syrup, and applesauce.  Yet he somewhat accepted fish oil, which he gets every day.  Any

suggestions are welcome.

I want to thank Nathan for stimming in the office today.  I think it was a very good thing for the doctor to see him in action.  I think it pushed him to be a bit more aggressive.

That’s about it for tonight.  Excuse me while my head explodes…

Speech And The Food Factor

Nate's language had stalled over the past few months, but right now it seems to be picking up again.  I am not naive enough to think that "this is it", but I am enjoying it, that's for sure.  Food has always been the ultimate motivator for Nate, as it is for many kiddos. His first words revolved around food and any progress that occurs seems to be at mealtime.   He has been saying "more" forever, and eventually he did add "cup".  What happened though is that he started identifying every object as cup.  And the other things he likes seem to start with c as well- corn (popcorn), chip, chicken, etc.  Below you will hear him say more cup to start and then correct to more chip.  You can distinctly hear the "ch" sound in there.  Not that big of a deal for most, but for us- well, for us it's almost tear-worthy.

Just Add Water...

And the grocery store.

Jack has been doing pretty well lately.  It “feels” like the meltdowns have been a bit less frequent and maybe shorter in duration.  This of course makes a huge difference for our family and really gives a sense of calm to the household (relatively speaking).  I feel like I have been able to discuss things with Jack to a certain extent, actually reason with him at times.  It’s amazing.  As parents, the smallest things can make a huge difference right?  Like Jack is finally confident in opening his car door by himself.  Just having that one task taken off my plate when getting both boys situated in the car is awesome.  So something like a more relaxed atmosphere in our home has a huge impact.  Jack is also doing very well socially at camp.  There are several other little boys who he plays with every day and he looks forward to going.

Is it the medication?  Is he maturing?  The differences are subtle enough at this point that I really can’t answer that.  I still believe that he is likely on a sub therapeutic dose of his medication, and since he has been holding steady at 19.5kg since May, I don’t think that’s changing anytime soon (once he hits 20kg, the dose will be doubled).  All I know for sure is that there have been some differences.

In typical, comfortable situations.

Today brought that all home faster than you can say lobster. 

It has been raining all day, and on days like this, I love having breakfast for dinner.  And Jack likes making pancakes with me.  So when I went to pick Jack up from camp I decided we would run by the grocery store and pick up a few things so we could make it tonight.  I should have known the minute we stepped outside and Jack saw that it was raining that this was not a good idea.  Little adaptations that we all make to changing circumstances are so difficult for children on the spectrum or really any child with sensory processing issues.  If you tell him to run for the car because it’s raining he stands stock still and screams about it.  When we drove through a puddle he screamed at me to stop. The sound of it and the different feeling of it really bothered him.  He kept telling me he was going to turn the rain into fire.  Why he thinks this would be better is beyond me, but that was his plan.  He couldn’t bear to leave the paper airplane he made at camp in the car when we got to the store but then he had a meltdown because it got rain drops on it. 

It all went further downhill when we went into the store.  He is obsessed with the lobsters, like that is all he can talk about from the minute we go through the door.  I made him wait to go see them until we reached that point in the store.  He yelled when I picked up mushrooms (for me), he cried for gluten free chocolate covered pretzels, (which I gave in to) and then he ran for the tank.  Nothing too bad so far….but then he flipped out because one of the lobsters was missing its claw.  Freaked. Out!  I reminded him that it will grow back (not that there will be any time for that, but in theory it’s true), but then he spotted a lobster with barnacles which also upset him.  Then he saw that one had managed to get out of those little rubber bands they wrap around their claws.  I jokingly said he’s going to escape and that did it.  He started screaming “save the lobsters! Save the lobsters!”  When I say screaming, it’s not an expression, he was literally screaming.  People were staring.  My face was turning bright red as I took deep breaths and tried to pretend this was perfectly normal.  I am a good mom, I am a good mom.  He knows right from wrong, he just can’t handle this atmosphere.  This is what I say to myself at times like these, and repeat, and repeat and repeat.

He was pretty amped up after this, but did ok through most of the store.  He begged for things, but that’s to be expected.  A lady told us she wanted sausage too when we were on that aisle and Jack yelled at her that she couldn’t have it- he thought she was taking ours.

The culmination of this lovely excursion had to be when I opted to go to the self-checkout lane.  The other lanes were swamped and frankly I wanted to get the hell out of there. Jack was very distressed by this situation.  “There’s no one in a yellow shirt, where’s the yellow shirt guy??”  He didn’t like me scanning things (apparently when I make the beep it’s offensive), and he tried to grab everything off of the belt.  If you’ll recall, these belts are extremely sensitive to weight, so consequently, I kept hearing that annoying robot voice telling me to “please return all items to the scanner scale”.  He didn’t like that either.  Lastly, apparently it is also offensive when I bag the groceries- “I’m gonna eat those bags!!!”

He totally lost it on the way home- blaming it on his wet paper airplane again, but the truth is he was sensory overloaded.  Not his fault. 

I rarely take Jack to the grocery store, even with preparation.  For a child that is a sensory avoider, there are just too many unknowns.  Too many things that can set him off.  Nate loves the grocery store.  He is a seeker.  Another good example of this is Jack’s hatred of the rain, walking in the rain, etc.  Meanwhile, I tried to get Nate to stay near the umbrella today and instead he stood away from it, head tilted toward the sky, laughing like a little hyena when the rain hit his face. 

Clearly I let the last week or so of improved behavior go to my head.  It’s easy to forget how sensitive Jack is to sensory input, and thus, changes to his environment.  This was a good reminder.  It’s important to continue taking him places or this will never improve, but planning is needed, and rain OR store would be good, but not both.

Lesson learned.

Published!!!

Just thought that I would share….I stuck my neck out a bit and submitted one of my posts to a special needs website.  It was published today- whoo hoo!

http://www.spdbloggernetwork.com/2013/07/12/trial-by-field-trip/#more-74332

Here is some information about the site:

Established in February of 2011, the Sensory Processing Disorder Blogger Network is a community of special needs parents committed to supporting each other’s journey by writing about their sensational lives and sharing them here.

It’s nothing huge, but it’s a step, so I’m really excited about it.  Thanks as always for all of your support!

Naughty

And I mean that in the nicest way possible.  Naughty Natey.  He has been quite the little troublemaker this week.  And this makes John and I grin at each other and say “isn’t that great??” 

Let’s see, he figured out how to open our front door, and he has run away from me laughing on multiple occasions (that part is not amusing).  Don’t worry; the front door is now locked at all times.  He figured out how to open his closet door and has been hiding in it several times when I come in to check and see if he’s sleeping.  He has been knocking over his bedside table (it’s a little pedestal table) every single time I put him to bed in protest, I have had to take it out of the room.

He broke one of my willow tree figurines (the one of the married couple from our wedding no less) by standing in our bay window, leaning over to the piano and swiping it off.  John is very upset because his legs are broken.  Ha.  He has taken to coming out of his room every night in the middle of the night and into our room, at which point he lies between us and kicks us both repeatedly.

He keeps trying to climb back into the bathtub when his bath is over.  When I tried to get him out the other night he made himself limp and then laughed at me while I tried to lift him out.  He is obsessed with potato chips, the other day while I was still working in the other room he grabbed the whole bag off the counter- I found him and our dog Riley chowing down, one with his hands in the bag and one with his nose in the bag- like little co-conspirators. 

So he is scheming.  He is really thinking about what he is doing and he is wreaking havoc.  These are yet more examples that could go in my previous blog post, Accomplishments Only an Autism Parents Could Love http://jackandnatesmom.blogspot.com/2013/06/accomplishments-only-autism-parent.html

I love to watch those little wheels turning in his brain, I consider this major progress.  Not to mention some of his verbalizations.  When he was in our bed the other night he was being really loud, I kept saying “shhhhh”.  John and I heard him repeat this several times, and at one point I’m pretty sure he said “mama said shhhhh”.  Of course then he laughed and kept going, but still….

I will say I am on high alert for loud noises, things being knocked over, doors opening etc, but this feels like a pretty “normal” parenting concern.

100% Worth Watching- As In **Please Watch**

One of my fellow  bloggers just posted this video, and it's one that has been and should continue to be shared within the autism community.  I think that for those on the outside looking in on “the autism community”, those who don't understand how emotional it is to be on this journey, or who haven't taken the time to really think about it, this brings it home in a very real way.  I have to be honest and say that even though this video has been all over twitter/you tube  for many months now, I have never watched it.  Katy Perry and a little girl with autism sing "Firework".  OK.  Well, I watched it tonight and the tears are still streaming down my face. 

THIS is what we are striving for for our children, all of us.  We want them to feel like regular kids, to feel like they are good at something, like they have value.  For Nathan, we just want him to talk to us.  Every time I hear a story of a nonverbal child becoming verbal it gives me just one more sliver of hope.  Makes me want to spend extra time working with him, giving him everything I have.  Every autism parent goes through periods of hopelessness- it's natural with the roller coaster we are on.  Here is one more thing to cling to- also, really listen to the lyrics- I feel like this song now "belongs" to autism, if that makes any sense.  I am sure that's not how it was originally intended, but it most certainly fits, like a glove.

Please watch, it's worth the 9 minutes I promise