“So, what’s your take on vaccines?”

I've gotten this question with much greater frequency lately. The general public seems to be increasingly aware that families with autistic children have some serious concerns about vaccines, and I'm finding that people are much more curious about the subject – enough so that people I've just met are willing to ask me what I think. Even friends that we've known for a long time have summoned the courage to ask me. So what do I think about vaccines?

It's complicated.

The community of folks who believe that vaccines play a role in the causation of autism are (as many small, vocal groups raging against The Machine are) depicted as crazy, grieving people who are simply looking for something to blame their child's condition on. You've seen the news clips, I'm sure – followed up by Important Experts in white coats explaining condescendingly that research has shown that vaccines do not cause autism. Okay. True.

But that's not what this growing community of physicians, psychologists, therapists and parents are saying. No one's saying that vaccines are the sole cause of autism. If they were, we'd have figured that out long ago. Here's what these "crazy" people are saying: 1) there is a genetic predisposition or sensitivity. 2) There is a toxic event. 3) There is over-use of antibiotics. So in some children, 1+2+3=autism.

For the record, I'm one of these "crazy people." But I'm not crazy. We're right. Continued research will prove it. And there is going to be a huge cost to make this right.

Rob & I can look at our combined family histories and see that the genetic propensity was there. No one had autism, but there are related disorders on both sides of the family. Check off box #1 for "Genetic predisposition."

Okay, on to box #2: toxic event. I was concerned enough after T's diagnosis that I dove into some serious online research. I had T's vaccine schedule on the desk next to me, complete with every vaccine's manufacturer, lot number and date received. I found websites of law firms who were pursuing class action lawsuits, and checked their list of vaccines containing thimerosal. Thimerosal was taken out of vaccines in the spring of 2001 where we were living, and that was just a few months before T was born. None of T's vaccines were on their lists. T also has never shown any signs of regression – a huge heartbreaking condition that is being pushed aside in all this research that is being done now, saying that vaccines do not cause autism. In any case, T never regressed, and newly armed with the information that none of his vaccines were targeted for class action lawsuits, I heaved a sigh of relief – but I haven't fully exhaled yet.

I'm not sure that I ever will. Why? Because something is going on here. Not just with our boy, but with hundreds of thousands of boys and girls. Seemingly healthy, typically developing children go in for their shots and come out FOREVER CHANGED. How can doctors and researchers look a parent in the eye who took their child in for a vaccine and two days later had a child who wasn't talking anymore and had completely withdrawn from the world and say to this frantic parent that it WASN'T the vaccine that did it? HOW? HOW? HOW? "Oh, it's all anecdotal. Nothing's been proven yet." Well, all you friggin' Einsteins out there, isn't EVERYTHING anecdotal until proven??? How many kids will it take until we finally say "Okay, there is no such thing as a genetic epidemic. Something must be going on, and it has to be in the environment somewhere." I am getting so sick of hearing spokespeople for vaccine manufacturers and chemical companies saying that their products are safe because they've never been proven to be harmful. Again you friggin' Einsteins out there: what about proving that they are SAFE???

But I digress and I'm getting a little hot under the collar. At least I can say, with reasonable certainty, that vaccines didn't cause T's autism. But there are two events that happened during pregnancy that will forever have a question mark above them for me: the Rhogam shot and the flu vaccine I received, both under doctor's orders. Both contained thimerosal. Was this the toxic event that tipped the scale for him? Perhaps this is why we never saw regression. The deed was done in utero and set in motion. No regression, just delayed – just a little at first, then more by 12 months, even more at 15 months, and we were looking at autism by the next year. And please, no replies urging me not to blame myself. I truly don't. I'll never know if those injections had anything to do with it. Maybe they didn't. The toxic event could also simply be the toxic soup we live in. And if you don't think we live in toxic soup, well, there are tens of thousands of new chemicals that have been created since WWII. A mere sliver of that number has ever been tested for their safety. Read those last two sentences again. That means that there are thousands of chemicals out there that have never been tested for safety, and they are put on our crops, in our food, in our clothing, in our cleaners, in our air…hello, toxic soup. I think box #2 can be checked as well.

Box #3: over-use of antibiotics. T had a string of several ear infections when he was two that all were treated with antibiotics – one right after the other. I swear he was on several rounds antibiotics in about a three month period of time. And throughout his childhood, we never met an ear infection that didn't meet an antibiotic. Check that box, too.

So, do I think vaccines cause autism? No. But I do think that they are proving not to be safe for increasing numbers of children, and I'm sick of vaccine manufacturers and the AMA trying to prove they are right instead of looking at the numbers and fixing the damn things. Don't give so many at the same time. Don't give them so early. Let the immune system develop before slamming these teeny bodies with 24 shots in the first two years. And get the shit – er – chemicals OUT of the vaccines.

I fully realize what is at stake here. If vaccines or chemicals in the environment are proven to be a major part of the autism equation, then all these major players will be culpable for causing this epidemic. And they will never concede that.

In the meantime, T is who he is, and he is a true blessing to us and to everyone in his world. A sweeter, happier soul you may never meet.

And if we have another, we're doing a very different vaccine schedule. You can count on that.

Hard Data

We recently had his 3 year re-evaluation conference with his school district. It's a wonderful school district, and we've never had to go to battle with them for anything. But one subject matter was not easy to discuss. For this re-evaluation, a developmental profile was completed. His age equivalencies for different areas (such as physical, social-emotional, cognitive, etc) range from 1 year 11 months to 2 years 11 months.

He's 6 years 11 months old.

Daddy

Right before bedtime, I listened to a voice mail from Rob on speakerphone. T heard his daddy's voice from across the kitchen, walked over to the phone and said "Daddy." I said that it was, and he put his ear up to the phone, listened, and said "Daddy?" again. Wow. I explained that this was just a recording, but asked him if he wanted me to call him. Not getting a response, I did anyway. We got Rob's voicemail, which T listened to intently, and while he heard his daddy's voice, kept saying "Daddy. Daddy." Finally the beep was heard, and he said very quietly again, "Daddy" and then was quiet. I told him that we were leaving a message for Daddy, that we wouldn't hear his voice right now, but that he would hear our voices soon. Rob just came home a few minutes ago and said that he's never deleting that message. The first thing he heard was T's voice saying his name. Almost unbelievable. When we've been waiting as long as we have to hear purposeful communication, especially our names, you almost can't believe it when it happens.

What an exciting night! What does this little guy have in store for us next? I can't wait.

Reading to T

For months and months now, the bedtime story has been Panda Bear, Panda Bear, What Do You See? By Bill Martin, Jr., pictures by Eric Carle. Rob & I know this title and the entire book by heart by now, as truly this is the ONLY book we've been allowed to read. Believe me, we've suggested other previously favorite books and even a few new ones – only to be rebuffed. So Panda Bear, Panda Bear it has been. You must have guessed by now that tonight there was a change – and indeed there was. Rob usually does the bedtime routine, but tonight I took over the duties temporarily. And when I told him to pick a book, instead of going right for Panda Bear, he paused a moment, considered his options, and then handed me Panda Bear. No great surprise. But when I was done reading it, he rolled over on his side, looked at his little bookstand next to his bed, looked at me with those beautiful brown eyes, and tried to say something. He tried again. "Brown Bear." "Brown Bear, Brown Bear, What Do You See? Is that what you want?", I asked him. And he settled back into bed and waited for me to begin. And so our reading evening began. When Brown Bear was done, he looked at the bookshelf again. "What about Freight Train?" I asked. Again, he settled back and waited for me to start. Freight Train was followed by Dr. Seuss' ABC, The Snowy Day, and Guess How Much I Love You. Yawning had begun by the end of this book, so our reading time ended. But I'm still sitting here in disbelief and joy. I read to him for about 30 minutes and he was listening and following along.

New job, new mission

I am a working woman again. Life has gotten much busier than it was last fall, and the past few months have absolutely flown by. And yet, as busy as I am, I am feeling so comfortable in my skin again. I have purpose beyond our little haven here at home, and I am making a difference in the lives of other special needs families. It feels really, really good. And it feels good to say that!

In fact, when my friends ask me how the job is going, it's almost uncomfortable talking about how friggin' happy I am in this job. I don't know why it makes me feel uncomfortable – I guess it may be because I'm so used to talking about how rough things are that being in this good spot is so foreign to me. I drop T off at his full-time Verbal Behavior school (which is covered by insurance), go to my job, work with terrific colleagues (all of whom are mommies of special needs kiddos like me), talk with families who need help, pick up T in the afternoon, and have time to make dinner and hang out with him until it's time for bed. It doesn't leave a lot of time for extras, but I'm spending my time so incredibly well that even though I'm tired, I'm happy.

Now, some of the stories these families tell me are heart-wrenching. Some stories are incredibly, intensely frustrating. Some end up having some really happy endings, and some end up simply just being better situations than they were. Regardless, each family is so thankful for the help. Most days, I leave the office wanting to hug both T and Rob for being as wonderful as they are. This job has been eye-opening, certainly. I've told Rob that I wish my job didn't have to exist, but since it is seriously needed, I don't want to be doing anything else with my time while T is in school. I feel very, very blessed.

Hi Mama

Mother's Day morning 2008 brought with it one of the best spontaneous gifts I've gotten yet. I shuffled into the kitchen, having slept in (how glorious) because Rob got up with T and made breakfast. T looked at me, and said – unprompted – "Hi Mama."

6 years. 6 YEARS I've waited for these moments. I'm so stinkin' proud of him.

Awesome! He's my little talking man.

T’s first movie!

Today, T went to his very first movie! This was such a cool event. A local autism support group and therapy/support clinic rented a movie theater for the afternoon and sponsored a showing of Alvin and The Chipmunks. What did they do to make it friendly for T and the 25 other kiddos there? They never dimmed the lights and the sound was turned down to a comfortable level – nothing to overwhelm our sensory-overloaded little guys.

Previously when I tried to take T to a puppet show in an auditorium and the lights went down and the other children started applauding and cheering, he FREAKED OUT. Screaming, crying, throwing himself around – I literally had to hoist him up by the waist under my arm and haul him out. Poor little guy. I haven't really tried auditoriums since then, and have never – until today – considered going to a movie. Crowds are really tough. When going to fun community events with typical kids, we've had our share of glares and even a few unsolicited corrections from other mommies who were perturbed by T's giggling, pacing and echolalia (repeating words or phrases he's heard)– even when he's perfectly happy. So we've just made sure that wherever we take him, he has a chance in you-know-where of having a successful outing. But back to the movie!!!

He was SO GOOD. He went right into the slightly darkened theater with me, no problem. This theater is also a grill, so you sit at little tables and order food & drinks. Popcorn and drinks were included in the $5 admission, as well as free gluten-free and casein-free snacks. He sat right down at a table with me, nibbled on a GFCF cookie, enjoyed the popcorn, grimaced at the full-strength fruit punch, and didn't make a thing over the movie starting on the big screen. He really seemed to be just fine – no agitation or extra stimming – just sat and kept an eye on the screen. I even saw a few smiles after a while. And I just sat there, thinking over and over, "I'm at a movie theater watching a children's movie with my son." Wonder of wonders. About 75 minutes into the movie, he stood up and looked at me as if he were saying "Okay, I'm ready to go now", so I let him pace around and we were able to stay until the end of the movie.

Many other people there as well. I was struck by the age of some of the attendees – several well into their teen years. I wondered if they minded going to a children's movie when most teens would be so embarrassed to do so…but they happily ate their cut-up chicken tenders and French fries while watching the movie and seemed to enjoy it. How often have they had this opportunity? There were also several kids T's age – some following the story and laughing at the funny parts, others pacing, pacing, others vocalizing unhappily – but there we all were, in a movie theater, creating our own version of normal and our own version of reality, and it was a beautiful thing.

I love our new city.