Thursday, February 10, 2011

Thoughts on how: A long and boring post

This year at Christmas, my son's great grandfather (who we don't see but twice a year) could not get over the fact that Isaac would actually look at him, talk to him, and play with him.  He was delighted.  I thought this was as good of a time as any to break the news that we had moved out of the land of "sensory issues" to the land of autism at Isaac's three year check up in the fall.  I tend to be blunt- so I went with my usual tactic; spewing it.

"Well, papa, that's because Isaac has PDD-NOS... which means he has many, but not all characteristics of autism. He is not classically Autistic, or Aspergers, or has Rett syndrome.  And last time you saw him he probably was still adjusting to his new diet and feeling "off"." Or just plain beginning his recovery out of the land of the lost.*
Great grandma matched my bluntness with the question that followed: "Well, how did he get it?!"

Good question, grandma!  I've driven myself crazy with this question, but I think I've finally come to a hypothesis that I can live with using my trusty scientific methods- obsessing, reflecting, and researching.  Of course, we'll never really know HOW until autism research becomes more of a priority in this country.  But here are some thoughts from one mom with one experience.  I've come to the conclusion that just as all people on the spectrum are different, the causes behind them ending up there might be just as vast.

Let's start with my pregnancy, or as I like to call it- a trip to the third circle of hell where Dante himself paddled me around in his pontoon while I puked off the side.  I had what the medical professionals at Buffalo Women and Children's Hospital called "a true case of Hyperemesis Gravidarum".  I was only able to eat or drink anything a handful of times from six weeks pregnant to 5.5 months pregnant.  I threw up between 6 and 20 times per day.  Since there was no food or liquid in my stomach I usually just threw up blood and acid.  The doctor overseeing my midwife kept shoving Zofran down my throat despite it's uselessness and wasn't batting an eye at how many times I had to visit the ER (13 to be exact, hospitalized 4 times)- except when it caused him to leave his very comfy home in winter during the wee hours of the morning.  I'd like to send him my postpartum dental bill and ask him to pick up the tab for the 14 fillings I had to get and the re-bonding work that I desperately need done.  Hell, I'm going to need dentures.  My teeth hurt now while I'm sitting here.  Yes, solid gold dentures if you please, Dr. K.

My midwife was not much better.  Despite telling her that Hyperemesis Gravidarum ran in the family and that I knew that it wasn't going away anytime soon, she refused to put me on a PICC line until I was 12 weeks pregnant.  This meant that I had a solid six weeks of starvation and dehydration (minus when I was in the ER).  No big deal- it's only the part of the pregnancy when nutrition is MOST VITAL.  What's more romantic than getting a PICC put in on Valentine's day followed by a week long stay in the hospital?  I can't think of a damn thing, and apparently either could my midwife.  Alright, here is where I try to make a long story short.  The next few months were filled with me receiving all nutrition, hydration, and medication intravenously.  Note, there are no FDA approved medications for treating HG.  When we finally went to see specialists in Buffalo, NY to get me some relief they found a combo of about 5 meds that made me not puke all the time.  I hated taking all of those and not knowing what they were doing to my unborn child, but my options were very clearly either medication, abortion, or dying of starvation and dehydration.  We joked that Isaac would probably come out with webbed feet from all the meds, but that he'd be captain of the swim team at least. Ha!

Fast forward to labor and delivery in Michigan.  Isaac came out not with webbed feet, but a blue face due to the cord being wrapped around his neck and wrist that he had held up by his face.  Interestingly enough, he was in that exact same position at his 20 week high-def ultrasound.  It was a good half hour before they'd even let me hold him.  It was several hours before they'd bring him to my room.  They said he was "stressed out" from the cord incident.  Some research I've done has said that some brain damage could have taken place during this time, and that it could contribute to his current "neurological disorder".

The fact is, while some parents state that they can find no link to their family history and their child's autism, it is worth noting that the Loucks' and the Chambers' are no strangers to neurological issues.  I won't outline all of them for the sake of time.  However, when my husband and I discuss the question of "how", we usually end up morbidly joking that Isaac really didn't stand a chance at being typical- pregnancy complications aside.  Both Andrew and I can clearly recall having some extreme sensory issues as children, and he would be the first to admit that he's still pretty quirky today.  Even our Early On worker drew a connection between how similar Andrew and Isaac are in group settings- right down to their trouble making eye contact.  (Yep, we talked about you behind your back- and we think you're weird.)  And as much as I'd love to fully blame his genes for the possible contribution to Isaac's spectrum disorder, I would be remiss if I didn't tell you that I have an Obsessive Compulsive Disorder involving touch and numbers that I've been able to get under control to the point where you wouldn't even know that if I hadn't just told the whole online community.  Meh, now you know.  I will say this- neither Andrew or I had any developmental regressions or delays despite our other quirks.

Isaac was not quite as lucky.  He seemed to be developing normally enough until about 20 months of age.  Although, looking back he had some mini-markers of autism even as a baby.  We now know that many children on the spectrum suffer from reflux and yeast issues.  Isaac had both almost from birth.  He was one big spitting up, thrush battle.  Just before he turned one he randomly stopped making eye contact with people he used to love.  He would even hold his little hand up to his eyes so that he didn't have to look at them- his face squinted and uncomfortable like he was trying to avoid the sun.  We thought it was a phase.  Just like his read every book we own in one sitting, and then start again phase.  Just like his remarkable sorting, organizing, and lining things up phase.  Still, he was developmentally "on track".  He spoke the right amount of words when he was supposed to.  His motor skills were pretty good.  He walked on time.  I even have a list of short sentences he said at 19 months old.  I was so excited about how smart my child was that I recorded it.  That's where the proud mommy jotting left off.  At twenty months he just stopped talking.  No "mama" or "dada".  Nothing.  For months.  But there were plenty of other weird things going on to fill that silence, but that's for another post.

When I finally had him evaluated by Early On- three months after it being recommended to me by my doctor, more questions came up.  Did he have an illness around the time of regression? No.  Were you traveling a lot?  Yes.  To places that speak other languages?  No.  Was it around the time of his vaccinations?  I don't know.  I was so busy, exhausted, and worried that I didn't write anything down.  After all, who wants to record, "Well, he stopped talking.  He doesn't even say our names.  Oh, he finally started talking again.  He's two now.  But he can't pronounce some words he used to say perfectly.  He's getting weirder by the day..." ?
I didn't.  But now I wish I did.  I have gaps that can only be filled with gut feelings, and when you are married to a scientist anything short of empirical data does. not. count.  Can I confidently say that I think vaccines played a role in Isaac's huge regression?  No.  Am I skeptical of them?  Yes.  Just like Dr. K shoving Zofran down my throat because the pharm rep buys his office lunch, I think we need to weary of a business that's becoming a cash cow.  I mean, since when do we take the government's word on anything?  I guess since the alternative brings us fear.

So how does this woman compromise with her scientist husband?  We've agreed on an alternative vaccine schedule and to omit any "extra" vaccines like those for the flu, influenza, and random illnesses that he'd only contract from exotic vacations that we can't afford to take.  However, I totally respect those who have chose to forgo any more vaccines due to having more empirical evidence just as I respect my friend and neighbor who does not believe his son's autism is treatable.  How can you argue with a spectrum of experiences?  My thoughts are that Isaac's PDD-NOS is a culmination of hereditary, environmental, and possibly man-made causes.  I know that sounds less like a hypothesis and more like a big "I don't know", but thinking through these things has given me some peace of mind.  I dare you to argue with that.

*P.S. For the record: I do believe that it is possible, in some cases, to recover from autism or autistic characteristics.  I know that it offends some people when I say this because it makes autism sound like a disease rather than a disorder, but as a mom I have to believe it and I have to strive for it.  If I didn't believe this my son might still be barely talking, not sleeping, and unable to connect with people.  I will not apologize for or retract or re-word my above statement, but you are more than welcome to disagree with me


  1. P.s.s. I lost 30 lbs in my first trimester due to puking and lack of nutrition.

  2. Wow! I'd pretty much agree with your hypothesis - my daughter clearly had something going on from day one, I think it's a genetic predisposition that was affected by... well, really,who the hell knows what but like you, I can come up with a variety of possibilities. Since I've had 8 years to observe my child, and maybe also because I'm somewhat pessimistic, I tend to think that she just "developed" out of many of her autistic-like behaviors. That's why they call it a developmental disorder. Their development is just disordered but I am confident our kids can get to the same place or maybe at least a similar place as other kids. They just have a whackier route. I have so many other comments I could make but I'm happy to read your blog, glad Ruth connected us! Take care - you are doing a great job!

  3. p.s. by pessimistic I just mean that I don't think I cured her or that there was some miraculous recovery. I just attribute it to her development (and thank goodness for that). I wasn't sure that made sense... obsessive? me?

  4. I can get behind the development part. Isaac definitely seems to develop in spurts. Also, as one fellow autism redditer ( reminded me- people on the spectrum are not completely static. They change and grow, even if it doesn't always seem like they will. Thanks for reading. I've also been enjoying your blog!

  5. In addition to just plain development, his diet change made a drastic and undeniable difference in him and any time that diet gets messed up he regresses. Not everyone has this experience though.

  6. Libby, this post makes a lot we've ever talked about make so much more sense. I agree that even if all of your 'answers' add up to one 'i don't know', it's still extremely satisfying to have a list of them anyway....;)

  7. Engenue97: Who are you? haha I know your blogger/email name looks familiar, but I can't place it.