It's not me, but...

Just had a difficult moment, and it was mostly due to wanting something for him that he didn't want. Most of the time, my self assurance and confidence are in place, so moments like this usually don't phase me - I just seem to be a little more teary lately, even with all the monumental toileting moments we've had recently.

It's a hot summer afternoon, and he loves to play in spraying water toys in the backyard. But also in our backyard is our air conditioning unit. To say that he loves it does not even begin to describe the relationship he has with AC units. He cannot stay away from them. If he sees one, he runs to it, and if kept from doing so, we are treated to the Eagle Shriek, as we call it: a high pitched, VERY loud short shriek which, when experienced at point blank range in one's ear can render it shut down for several minutes, and if experienced in a shopping mall or grocery can make innocent bystanders jump at the least - or shriek a little themselves - and give him or me some oh-so-understanding blistering comment, which I'm very good at ignoring. Anyway, I brought out some of his new water toys that he got for his birthday last weekend. He even chose which one he wanted first. Then, he heard the AC unit on. He ran to it - no surprise. But even after I had set up the water-spinning penguin, he would not be moved. So darn it, I took him by the hand and walked him toward the new toy. I mean, it spins, there is water...what's there not to like for an autistic kiddo? But no, he fought me, gave the Eagle Shriek several times, and ran back to the AC unit. And I, in a not-so-proud moment, said, "Okay fine, I'll see you later," and went inside. He's outside with his beloved AC unit, grunting and stimming away over the spinning fan, and I'm inside licking my "wounds" and feeling sad.

I really need to be better than this - I know he's not rejecting me - he just is so obsessed by the AC unit that his mind can't get beyond it. Kind of like in Finding Nemo - there is a fish in the dentist's tank that loves bubbles, and he just waits by the treasure chest for the bubbles to come and when they do, he grabs the chest and says "bubbles, bubbles, bubbles!" despite everything else around him. My heart breaks at times like this, and as hard as I try to always have my Strong Mommy of Autistic Child guard up, there are times that my heart bursts through the guard and I just want to be able to play with my son and have ME be more interesting than the fucking AC unit.

Pooped in the toilet!!!

So the title gives it away, but I just had to share. Not once, but twice this week he has pooped in the toilet!!! I'm stupid excited. For weeks, I've been taking him to the bathroom & sitting him on the toilet when I see that he's Assuming The Position to poop in his Pull Up. (Sidenote: if Ican get them on sale and use a coupon, those suckers are $0.38 each - mulitply that by 7 years, and you can imagine my white-hot desire not to have to buy those anymore.) What's happened up until this week is that I sit him on the toilet, I sing potty songs and T playfully tries to flush or impress me with his upper arm strength by lifting himself up off the toilet seat. I know he has to poop - I can smell it, and I would have just seen him out in the kitchen starting to push. But to no avail - he would just wait me out until I give up and let him get up, and invariably, I'd turn my back to wash a dish or change laundry, and he'd poop in the Pull Up. And I'd try not to cry.

This topic, along with our taking him off special diets, has prompted so many well-intentioned suggestions, monologues and lectures directed at me that I am no longer entirely patient or rational when speaking about it. Have you tried this? Yes. How about this? Yes. What about...yes, yes, yes. I've tried it and it's been 7 years and if it were that easy I WOULD HAVE DONE IT BY NOW. And he'd be potty trained and I wouldn't have lost probably the equivalent of 3 months' time of my life sitting on the floor of the bathroom trying to encourage him to poop. Think I haven't been trying to potty train him since he was three? Every poopy diaper is a reminder of 1) just how delayed he is and 2) how much of a failure I feel that I am in this area.

See, not too patient & rational anymore. Of course I'm not a failure. But he is delayed. Remember: functioning at about a 2 1/2 year age equivalency.

But back to the good news!!!! Monday, I once again caught him just as he was about to push. I smelled a few "warning shots", so with my patience in tow, I took him to the bathroom. Those faint of heart & with delicate sensibilities, stop reading. He sat down, and after a moment, I could see that the tiniest bit of poop had emerged. I praised him, patted & massaged his legs, encouraged him, and waited, and waited, and watched. Nothing. Several minutes passed. I'm thinking "For crying out loud kid, I can SEE you have to go! For the love of God, DO IT!" So maybe this was divine intervention, but I started singing vocal warm-ups to him. He thinks arpeggios are hilarious, so I sang them. I sat on the floor of our half bathroom singing arpeggios and made him laugh and smile and laugh some more, and then...quite to his and my surprize...PLOP, a poop hit the water. It was one of the most beautiful sights ever. And the addus bonus, he did it again the next day. Haven't caught him since Tuesday, but I will - and he'll get the hang of it.

I have to laugh when I think of this story, though. I mean, what a truly bizarre story - my singing my operatic warm-ups in the bathroom while my son takes his first dump in the toilet. But he did it, by God, and I'll sing in the bathroom everyday for the rest of my life if it will help him poop in the toilet.

Is that water running?

A momentous night! We were all enjoying our dinner out on the porch. T was happily eating his dinner (which has gotten considerably easier lately since he's been willing to try new foods – amazing) when he quite quickly and purposefully stood up. He looked at us both, then at Rob, and even moved toward him and mumbled something. It was another one of these glimpses of T trying to really communicate with us, which is happening more often and is very cool. Rob asked him if he wanted something, and I asked him if he needed to go to the potty. He said "No potty", but went inside. Rob & I marveled at the attempt to talk, wished we understood his words better, but stayed on the porch and continued to enjoy the unusually temperate early July temperatures. A few moments later, we heard the distinct sound of what we thought was water running – not unusual for T, since he really likes to play in the water. But both Rob & I looked quizzically at each other, went inside, and discovered our boy standing in front of the toilet, peeing into it without having had any assistance whatsoever!

YAY!!! All by himself. Okay, this meant that he 1) felt that he had to go (huge), 2) knew that he had another option other than peeing in his Pull Up or underwear (even huge-er), 3) wanted and tried to tell us (awesome), 4) walked into the house and went to the bathroom, 5) pulled down his pants, 6) pulled down his Pull Up, 7) lifted the toilet seat and lid, and 8) PEED in the toilet!!!! Oh my God, he did it!!! This means that he CAN, he CAN, he CAN DO THIS!!! I know he won't have this all down tomorrow – and we still have to work on the pooping – but holy crap, this is such a big deal. He did this on his own. By God, he's going to be able to be potty trained. He will, he will be, he will do it.

I am so friggin' happy. I'm so proud of him!!!

And if that wasn't enough, later on, I was walking by him and said that I'd be right back – that I needed to go wash some more dishes (which still need to be done, by the way.) He said "No downstairs", reached and gently pulled me by the elbow and quietly said "1-2-3." He was asking me to play our little game where I count to three and throw him on the bed. He ASKED me to play with him! Our little guy – he amazes me and inspires me and gives me such hope for his future. I am very happy tonight.

“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.