Going Public with it

For a long time, it was a secret to all but our closest friends and family. Because Joseph is high-functioning, I could get away with not telling anyone. After all, no kid the age of two (ok, no boy the age of two) has social skills worth noting, and anything else could be written off as quirky toddler behavior.

People called him shy, or young for his age. But they didn't call him autistic. And that was important to me.

Jenny McCarthy has written that she knows she's putting her son, Evan, into the limelight as the poster child for autism. And I wonder, how good is that for Evan?

Even I look at Joseph sometimes and only see autism. Do I really want the rest of the world to do the same? Is it fair to put that label on him?

I don't know what's fair. I only know that, for a while now, I've been feeling a strong inner compulsion to go public with it.

I suppose this blog has been the first step. Friends have read it and reached out, saying they had no idea what we were going through. Joseph's preschool teacher, who takes classes herself, said they'd covered sleep difficulties when studying autism, but only after reading my blog did she really get it (something about me acting like a raging alcoholic in the middle of one dreadful night -- see July 13 post).

But I am a public speaker, and it is time to talk about it. Not just for the rest of us, but even for Joseph. The pitfall, yes, is that more people will label him. But the trade-off is that more people will understand him, and kids like him.

To be truthful, I am not looking forward to this label for myself. Mother of an autistic child. Mother of a child with a disability. Yuck. That's not who I am. But it is a piece of who I am . It has shaped me and molded me, and it's time to honor this process more completely.

So, this coming Monday in Toastmasters, I will tell the story of how Joseph was developing normally until around the age of 2. I will speak of the devastation of an autism diagnosis and the black hole I fell into afterwards - complicated greatly by a continual lack of sleep. I will talk about the treatments that have helped us - the lesser-known dietary and biomedical sides, the more known behavioral approaches. I will describe how far he's come and how the future is still uncertain. I will tell them that they'll be hearing a lot more from me about autism after this.

What I want to do is ask them, beg them, not to look curiously at Joseph -- the autistic kid -- after this. I want to say, please don't start talking to him in a baby voice, or asking me how old he is when you could ask him.

I want to say, please know you can still ask me how my kid is doing -- it's not a taboo subject -- I am still me, and he is still him.

But I won't. Human nature is what it is, and if I am being asked to step up to bat on this, then I will do so and let God handle the rest. As for Joseph, pardon the switch in analogies but his karmic wagon is hitched to mine and I can only go with my intuition.

Six days to ready myself. Gulp.

The Value of Valtrex?

Jenny McCarthy's journey seems to be both loved and despised by other autism families. For me, I take what I like and leave the rest. I do believe that there is value in much of what she proposes, most particularly that the epidemic of autism is the canary in the coal mine. I believe it is a sign that our toxic environment is destroying us.

Joseph was never vaccinated, so we can't blame autism on that. However, when I was in labor I had an infection and they blasted me with antibiotics. Then, after Joseph was born, they did they same to him. My belief is that he came in with an already-compromised immune system, and this tipped him over the edge.

Our naturopath, Dr. Glen, added an interesting addendum to this theory of mine: since my gut was damaged by the antibiotics and Joseph existed solely on breast milk the first six months, there weren't the proper ingredients in my milk to help his gut to heal. Voila: autism.

Back to Jenny McCarthy. One of her colleages is a man named Stan Kurtz (www.stankurtz.com), who recovered his child from autism -- as did Jenny. I am not very knowledgable medically, but my understanding of Stan's pet theory is that many of these kids have an often-undetectable virus in their system.

He feels that the body will try to fix the crisis of a virus before addressing the problem of discharging heavy metals from the system. And we all know that children with autism have high levels of heavy metals in their bodies. They can't seem to dispose of it the way that typical children do.

So if lab tests don't pick up a virus, how can you tell there is one? According to Dr. Glen, an underriding virus will show up now and then in peculiar ways: unexplained fever, flu symptoms, eczema, that sort of thing. It will cycle in and out.

This does happen with Joseph every month or two, so we've decided to give Valtrex a try. We are very grateful to do this with the help of Dr. Glen, who is working to support Joseph's gut, elimination and detox processes while we undergo the Valtrex trial.

It's been a whole day. I am a little bit hopeful and a lot interested to see what happens.

Will it be Valtrex Schmaltrex or Valtrex the Miracle? Or something in between?

Stay tuned.

And good night.

A sick boy

You know that autism is a weird disorder when you're relieved that your kid is sick.

We work so hard to help Joseph (he's 5) bridge those autism deficits: social skills, emotion sharing, referencing (via eye contact) and more. And we've come a long way.

One of the odd things about this particular parenting journey is that you obsessively pay attention to every change in your kid, even every nuance of change. And one thing we've noticed lately is more interest in other kids. Joseph's been eager to hang out with kids at playgrounds and at preschool -- he'll imitate them and begin to join in on their games.

This has been very exciting. His preschool teacher promoted him socially from an early 3 year old to a mature 3 year old. I can't tell you how good it feels to see him run toward kids instead of away from them -- to see him smile with delight when another kid shows up when he used to just scream with fear.

So. Today, at the playground, Joseph wanted nothing to do with the other kids. He wanted to be there, but he played separately, away from the others. It finally culminated with him screaming up on one of the playsets when the kids were around him. I had to intervene and take him away.

Anyone touched by autism knows the fears that come up: Has he regressed? For good? What the **!!&% happened? Did I feed him gluten or something? The mind jumps ahead to one's child at 21, or 31, or 71, never having made a friend, always alone and isolated.

But then we got home and I noticed, hmmmm, his forehead is a little warm. I take his temperature, and, sure enough, he's got a fever of 101. Phew. What a relief. It's not regression -- he's just sick.

See? Autism does crazy things to a parent's head.