Thursday, 28 August 2014

The Vaccine Controversy: A Middle of the Road Autism Mom's Perspective

So, I guess I should start this by saying, yes I have been following all of the vaccine stuff of the past week, but if you are on my facebook page at all, you already know that.  I think the unfolding of this story is going to be a long, drawn out process, I think there is much more going on than we are aware of.  Besides the video that was released that had recordings of Dr. William Thompson in snippets talking about the validity of the 2004 MMR study, another recording has been released of him discussing thimersol being given to pregnant women in the form of the flu shot.  I will attach it so you can see what I am talking about.  The validity of this recording of his voice in particular has not been confirmed, but he did confirm in his press release today that although he did not know he was being recorded, the initial recording relating to the MMR study was him.  I have no reason to question that the second one is as well.  The second one actually bothers me much much more- probably because I was pregnant with Nate during that whole swine flu panic in 2009- I had the flu shot and the two swine flu shots while pregnant because I wanted to protect my unborn child.  Now….oh man.
I am not even going to attempt to change any minds or come out as pro or anti vaccine here.  I don’t know what the hell I am anyway at this point.  My boys are fully vaccinated, completely on time, because I was being a “good” mom.  They got their flu shots- until, that is, we started with our current, amazing pediatrician who advises against giving a shot with thimersol in it to my sons with autism.  So I don’t do it anymore.  Last year my husband was the only one who got the flu shot.  And guess who got the flu?? 

What I do want to do is give some background on the evolution of my thinking regarding vaccination, any links to autism, trusting the cdc, etc.  I have mentioned a million times in the past that I am a nurse.  I thought I knew it all, had taking care of my kiddos all figured out, especially the medical aspects.  My older sister had her children first, and questioned the traditional vaccine schedule.  She altered it in a way that made her more comfortable.  I scoffed at this- sorry honey, but at the time I did, just not when we talked,ha.  My sister was a “granola” girl, you know, home water birth, no epidural with her first baby (is she NUTS lol), I figured she was just questioning everything “mainstream”.  I thought it was silly.  The recommendations are there for a reason, and we should follow them, right?
When Jack was born, I had a sucky obstetrician- it’s just a fact.  She didn’t send my medical records to the hospital in time (I was only a week early), and because they didn’t have documentation that I was immunized against hepatitis B, it was required by law that Jack receive his first hepatitis B shot before he was discharged.  So I said ok.  My child screamed for nearly 36 hours after he had his shot.  Not, oh, this baby is awake and realized he doesn’t like being out of the womb crying, I mean bloodcurdling screams, and he could not be calmed by anyone.  Not the parade of nurses, lactation consultants, doctors, grandparents, his clueless (at the time) parents.  Nothing could console him.  It was one of the most distressing things I had ever seen- here I had my first son, I was so full of joy, and I couldn’t comfort or soothe him.  It was terrifying.  Something was not right.  To this day, I feel like this had a permanent effect on him- he was just different.  When he was born he didn’t even cry- he just sat there looking at the warmer light.  The nurses kept smacking his feet to try and get him to make some noise.  After that shot, he never slept in a bassinet or crib for over an hour again, he was restless, fussy, there just aren’t even words.  He was tough, that’s all I can really say. 

Then Nate.  After my experience with Jack, I took charge of this birth experience.  I did hypnobirthing, did not want an epidural, did not want anything interfering with the natural process.  I mean I had a heplock in my arm in case they needed to hook me up to an IV, but they never did.  I did not allow any shots for Nate while we were there.  He did great.  He had a rough first year and a half physically in terms of infections- ear infections, upper respiratory- lots of antibiotics and nebulizers.  And yes, he had all of his shots on time.  But he had great eye contact, was picking up words, playing with toys appropriately, pointing- things I really appreciated because Jack had never done them (except the talking of course).  That changed at 18 months.  Yes, he had a huge round of vaccines.  And YES I do think that played a role.  I also weaned him from breastfeeding right around that time- maybe that was a factor.  Maybe it was already, as the mainstream medical community would say “in him” and the timing of his regression was coincidental.  All I know is that I lost him.  And it was by far the worst experience of my life.  I will even post before and after videos for you. 

Before (he was about 1)
After (almost 4 years later):


This is not to "prove" vaccines caused Nate's autism.  I don't think that it was a causation thing- I do think it's possible that this one more assault on his little body was a tipping point or switch- that he was on his way there due to genetic predisposition and this was a final trigger.   I want people to understand that this regression concept, it's real.  Look at his interaction before and his interaction now.  And since initial diagnosis, he is GREATLY improved.  

So my point.  I am not anti-vaccine.  I am pro vaccination- careful vaccination, especially if there are risk factors- such as in our family where there is a history of autism and other autoimmune issues.  (yes, I believe autoimmunity plays a role in autism, so there).  I AM anti bashing.  The things that are being said to autism parents who dare to QUESTION the norm, to express their concerns about the current vaccine regimen are slammed like you wouldn’t believe by people who have no clue what autism parents have experienced or continue to go through.  Even in light of the new revelations of the past week, which actually most people don’t know about since the media is not reporting it, this attitude remains.  When the media finally did speak up this evening, they focused on what may be a crap retrospective analysis of data by Dr. Hooker instead of the statements of the esteemed CDC researcher Dr. William Thompson.  Pay attention people to the credible person speaking- he questions the study- he thinks further research into the safety of vaccines is warranted.  We are not morons.  So stop saying things to parents like:
Such selfish parents.
Silly people endangering us all with their self-perpetuated fantasies.
Anti-vaxxers are a danger to society and bad parents
Here is Dr. Thompson’s press release from yesterday evening:

This is not a hoax, this researcher released the above statement, and is questioning the validity of the paper they generated.  He is calling for further research.  While telling us to continue vaccinating.  The results he is speaking of affect a very small segment of the population, true, but I don’t think it’s these specific results that have parents so concerned.  I think it has much more to do with the idea that potentially important information was left out of the final report from this study.  And if it was done in this study, what about the others?  This doctor co-authored I believe 9 related studies.  So is this a one time thing?  Or is there more to come? And I think it’s right to question that at this point. 

Tuesday, 12 August 2014

My Child Is Mocking Me

I have to give my little Natey credit- for someone with limited verbal resources, and supposed “impaired communication” (depends, in my opinion, on what you consider communication), he is certainly making potty training a wild and frankly entertaining ride for mommy.  And yes, I swear to God, my child is mocking me at this point. 
He continues to resist the potty, crying when we take him, hitting us, screaming  no, saying “don’t like”, occasionally “don’t like potty” , “don’t want”.  Anger always makes him use his words, so that’s nice to hear when you usually struggle for each word.  The hitting, not so great, neither is the kicking.  I am not one to ignore my child’s unhappiness, but this is a change in routine for Nate- he is not going to like it- it’s out of his “comfort zone” and for any child with autism this is extremely difficult.  We just have to work through it. 

He has been communicating his dislike for the potty in other ways as well- such as sitting on the potty with me for 20 minutes, walking out of the bathroom and wetting his pants  5 minutes later and then SMILING at me or laughing when I say “accident” and “uh oh” .  NOT funny.  OK, a little funny. 

He still likes to watch his little social story video about the potty sometimes.  It goes something like “go potty please.  Walk walk walk to the bathroom, pants down, sit down on potty, I’m going pee pee….” Etc.  Well I took him to the bathroom the other day and he was not happy about it.  He sat down on the potty and I whipped out my iphone to show him the story.  As the app was loading he looked at me with this sarcastic little grin on his face and said “walk, walk, walk”, and then started laughing.  Mocking.  Me.  He has never repeated words of a story like that before though, so actually it kinda made me well up a bit. 

He capped off the past few days of fun today by stalemating me from 7 am to almost 1pm- nothing- not a drop.  I decided I would give him a taste of his own medicine.  We were gonna sit there in the bathroom until he produced some results!  I was working on a test for work while he watched a movie on my phone.  After about 40 minutes, I looked over and he was going!  Halleluiah!  I praised him heavily, gave him some marshmallows- he smiled, and proceeded to drop my iphone right into the full training potty.  UGH.  
Somehow, even when I won, he got me!  Damn it!  Now my phone sat in rice for about 6 hours and is working fine, except the charger won’t fit in it, so I suspect a grain of rice is lodged somewhere where I can’t see it, which means a trip to the iphone store.  On the bright side, he stayed dry all day today!  That is the second day so far in let’s see, 11 days of potty training, which may not sound like a lot, but it is two more days than he would have had if we weren’t trying, so I’m pretty happy about it. 

The kid is a force of nature.  I am telling you, he is SMART.  He is so “in there” and just taking his own sweet time showing himself to us.  

Saturday, 9 August 2014

Autism, Limited Speech, and Potty Training.....Oh My

This special task can also be described as driving yourself to the brink of insanity all while making your sweet four year old sick of your face.  Or, in my case it could also be called what I did on my very brief summer vacation.  Sigh. 

I have been psyching myself up for this for months.  I have read so many books, not on potty training typical kids, but on potty training special needs kids.  OK, I just laughed my ass off at myself.  I just said “I read so many books” with a straight face. Ha.  I will never forget when my brother in law and sister in law were first pregnant I took a bunch of books we tried with Jack over to them since we weren’t using them anymore.  I think I kind of shocked them with the variety of topics.  It never occurred to me that maybe, just maybe, it was an absurd number.   That maybe most people get, What to Expect When You’re Expecting, and they’re done with it.  Oops.  We had like 30 books by then, I only brought a handful.  Most were about getting your baby to sleep.  Ask me if any of them worked.  So excuse me while I laugh at myself for a moment. 

Anyhow, I read books, my mother sent me a “helpful” power point (sorry mom, but well, ha), but really what I needed to do was steel myself emotionally for quite a process.  It is a well-known fact that kids with autism are extremely difficult to potty train, due to sensory issues, developmental delays (i.e., lack of control of bodily functions) and difficulty communicating.  Nate’s biggest issue is definitely the communication aspect.  We had super difficult sensory challenges with Jack, and we do not have those with Nate, so I can thank God for that.   I developed my “plan” and scheduled a weekend to start, then took the following Monday and Tuesday off so that Nate and I would have 4 solid days to just stay home and work on this with no interruptions.  I resolved to start with taking him every 15 minutes.  Yes, you heard that right, every 15 minutes.  My goal was to try and catch him every single time he went and reward and praise him copiously, thinking that the more positive reinforcement I was able to give him, the more the concept would sink in.
Well here’s the thing, my kid is a camel.  The child pees 3-4 times a day TOPS.  And no I am not kidding.  And still, with every 15 minutes (ok, well we increased to every 20 minutes after 2 days, with 5 minutes on the potty, then 20 minutes in between) we had….drumroll…..4 pee pee successes in 4 DAYS.  4.  4.  I said 4.  And mommy was entering a type of potty psychosis that no one ever wants to see.  Ever.  I am a very goal oriented person and was spending quite a lot of time blaming myself for “missing” opportunities, when in reality, I’m pretty sure Nate was sneaking away to go. I ended up with one of the worst migraines I have had this year.   On the third day, I found a video social story that made a big difference for us.  I am not going to say it will make a huge difference for everyone, but Nate is an extremely visual guy, and my concern was that despite all of the hoopla we were making about the potty, all the books, all the demos, etc., he didn’t understand what he was actually supposed to DO on the potty. This app gives you the opportunity to make the child look like him, and has the child walk through the potty steps, and it uses language that is very much on his level.  He loves to watch it, and I think he understood a bit better after this. 

On Wednesday, I had to take him back to Cisco Center, I had to go back to work, and I really just didn’t have any choice.  I put him in a pull up and talked to the instructors, who agreed to at least try the potty once an hour.  I had zero expectations and figured we would just try again over the weekend.  And then at about noon I got a text---- “success!”  And I burst into tears.  When I went to pick him up at about 3, he hadn’t gone again the whole day- typical Nate- he had an accident the minute we walked in the door, but frankly I didn’t care.  The next day, he went right before we left the house, and around noon I got the same text “success” again- picked him up at around 4 and he had been dry all afternoon- got him to the potty right after we walked in the door and WE had success again!  Then success again before bedtime.  Which means….he stayed dry all day!!!  Now he had an accident yesterday, and I don’t anticipate we will be consistently dry for quite a while, but he is showing signs that he is “getting it” and we will take it.  And we will keep going- hourly for now.  And I am just going to have to chill out.  If we miss an opportunity it is not the end of the world- this is a marathon not a sprint.  We will get there.