Monday, February 25, 2013


When we first got the autism diagnosis, and even when we just suspected it, it really felt like nothing but a huge red flag of failure.

Failure to spend every free minute playing with him, so he became autistic.
Failure to read to him every day, if I had, maybe he would let me read to him now.
Failure to take my prenatal vitamins every day. I could have prevented this.
Failure to think for myself: gave complete trust to my doctor and allowed my children to be immunized according to the doctor's schedule.
Failure to pick the right spouse and genetically setting my child up for autism.
Failure to see my child change right before my eyes until he was so far gone, anyone could see it.

.... Maybe if I hadn't taken so many hot baths when I was pregnant.
.... Maybe if I ate more organic food when I was pregnant.
.... Maybe if I exercised when I was pregnant.

Was I being punished because I never wanted twins in the first place?  
Was I being punished because I cried for three hours when I found out I would have a house full of boys, not dancing princesses as I had always envisioned?
Was I being punished for making some terrible life choices in years past?

Was it a combination of everything? Some of it?  Or none of it?

I had to work through a lot of guilt and blame.  But here's what I know:
Even if it's my fault that he's autistic, it will be me who brings him back.

After months of wondering, I finally went back and watched every video clip I have from August-November.  No one would have ever known.  I am not a bad mother.   Even when he was at his most symptomatic, he still had so many moments of clarity and presence.  I have the proof.  Attaching a video here from late October.  You'd never, ever know the child in this video would be diagnosed just 6 weeks later as autistic.  In retrospect, he never looks when I call his name.  But he is engaged in conversation with me throughout.

I didn't sit back and do nothing. The minute I was worried, I got Birth to Three involved.
The minute I got a diagnosis, I started doing research.
As soon as I got answers, I implemented a plan.

And I love him.  More than anything.
That's not failure.

Friday, February 22, 2013

Happy and Hopeful

Today we had a MOMs group outing to a bounce place.  I have been so nervous about outings with the twins primarily because Andrew is a big wanderer, and usually tries to head out the exits at every opportunity.  Meanwhile, Ben loves to keep me in his sights, so he doesn’t get much playing done while we chase Andrew and try to redirect and engage, and it rarely happens.

Today though, was fantastic.  Yes, he wandered a little, but it was much more predictable and controlled.  He really seemed to enjoy being in the bounce houses and got in the groove of throwing balls with the other little kids.  Well, they were throwing them, the balls came back down, and he knocked them on the floor.  It worked.     Also, several times if Ben and Nonnie were playing somewhere else, Andrew went looking for them.  

It was like being with a different kid.   And following two days of really great eye contact and lots of smiles, and almost all totally-appropriate play,  I am nothing but hopeful.

So far, he’s gluten and casein free, has been on probiotics for 9 days, and tonight we start Epsom salt baths.  Every couple weeks we will start a new supplement or treatment or idea.   Therapy is also really helping me learn how to teach him to play appropriately (today, we worked on throwing balls). 

I’m very thankful for all of you who reached out to me publicly or privately after my first blog post.  Thanks for supporting us in this journey.

Tuesday, February 19, 2013

On Vaccines. Just this once.

Big Fat Disclaimer: I am brand new on this autism road.  I know next to nothing.  I've been reading with every free (ha) minute I have, but I have tons to learn, and reserve the right to change my mind :)

I was that mom.  The kind that really, really, really tries hard not to judge, but can’t help it, due to her own insecurities.   I thought I knew better.   I have three kids, so I know plenty, right? A girl, two boys, all the bases covered.  And TWINS to boot.  I know stuff. 

I was so, so wrong.

I am only bringing this up because I brought it up in my comments on FB. I promise we won’t talk about vaccines again.  Or at least, only in passing.
I thought, these selfish girls, not vaccinating their children because they subscribe to this crazy theory that somehow it hurts children.  How dare they endanger MY children, who are fully vaccinated, who I hold down while they cry and get stabbed with multiple needles every couple of months.

I trusted my doctor implicitly.  He was my doctor from birth, after all. MY birth, not my childrens' birth!   I happily drive 30 minutes for every single visit, with three kids, because I can’t imagine trusting my precious ones with anyone else.  If HE thought this vaccination schedule was the way to go, who the heck was I to think differently?   Had *I* been practicing medicine for 30 years?  Did *I* go to med school?  That's what I paid HIM for! 
Yet the moment this boy was diagnosed, from the very first book, internet article, contact on the internet, the first thing always always mentioned as the villain are the vaccines.  And when you do any digging, at all, it is so clear that these babies are being poisoned with mercury.  

Now, will vaccines hurt every single child, of course not.   But for so many,  1 in 54 American boys, who have this genetic predisposition to become autistic somehow, who are maybe sick when they get vaccinated or get too many vaccines at once, it wreaks havoc on their little brains and their guts and they are not ever, ever the same.  And any reading at all you do on the topic, you will find these very basic facts.

So just so you know, I was a very loud proponent of getting your babies vaccinated, on schedule, and basically doing whatever your doctor thinks is best for your kid.  A “necessary evil”, I called it.

I was very, very wrong.  For those of you I judged, I am sorry. 

That Day

There are days in each of my three children’s lives that I remember so vividly, I can relive long moments of those days on demand.   

With Ava, it was November 6, 2006. She was 19 months old. I knew from the minute I woke up that something was going to go terribly wrong.   Her substitute daycare teacher yanked her arm in such a way that it dislocated her elbow.  My baby was in pain, and the teacher didn’t mention it to the director, or have me come get her, and mentioned nothing when I picked her up.    That day I learned that no matter how freakishly intertwined my daughter and I are, no matter how much I love her and no matter how hard I try to protect her, I can’t.  The love I had for her, so complete, so full, indescribable.  Something broke that day, in me, and I began to guard my heart almost, from loving her too much, because I could not be that hurt again.  I thought I wouldn’t survive it.

With Ben, it was the day he was born – or, more specifically, the 24 hours after his birth.  We knew something was wrong with his kidneys, we knew he’d go to the NICU, but it was still awful when he went.    In recovery, the noises he was making – I just wanted someone to take him away.  When I went late that night to really see him for the first time in the NICU, I remember thinking – that’s MY baby?  I don’t know him.  Nothing in me could relate to him.  Even still, at 22 months, toddling around, healthy and happy as can be, I can’t believe he’s my son.  My other two look like me, and Ben couldn’t look more different.  He doesn’t cuddle, he doesn’t talk much, he is so different, but oh how I love that boy.  He’s a mystery to me still.

Andrew’s first was a hot, August day.  He was 16 months old.  He’d been acting different over the last few weeks, but not dramatically so.   We went to Burke Ridge Farms for ice cream and to feed the animals with our Mom’s club and my dad.  It was a very happy afternoon.   We got home, and I realized Andrew was beginning to run a fever.   It got high, fast.   He screamed, nonstop, around the clock, for four days.    And after he stopped screaming, he was never the same.    By October, his 18 month checkup, I knew something was terribly wrong. He was sick again, and I remember the doc saying that it’s OK to do immunizations when babies are sick, as their immune systems are already working, it will take the virus better.  I remember his concern on the MCHAT screening.   I remember looking at Andrew rub his fingers over the textured wallpaper and thinking, when the hell did this happen?  The examiners in my living room saying, so matter of fact, “either deaf and or autistic”.   His sedated hearing test in December, watching my baby go “under” and lay there so small, and just knowing – he could hear.   He’s autistic.    And then the day a month later in my living room, when my worst fears were confirmed.    He had been perfect.  Perfectly beautiful and perfectly smart and strong and wonderful.   Suddenly, so different.  We don’t know what his future will hold but we know we will have to fight to get him back in the smallest of ways.  And how many years will we lose in the meantime? 

I am writing again because I have to talk about how my son was taken from me.   And how I am going to work to get him back.