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.

Not sleeping: where the spiritual rubber meets the road.

Joseph used to wake up every single night...several times...for several hours at a time.

Night after groggy night.

Year after dreadful year.

It was torture. I nearly went barking mad.

I could easily have become a child abuser. The closest I came was in the middle of one particular night. Joseph had woken and was sitting in his room, playing (loudly) with his toys. I stormed in like a raging alcoholic, grabbed his toys and threw them out of his room, bellowing with all my might. He cried from fear.

Sigh. I am not proud of that moment. But I was almost insane. Truly.

When we went to our first biomedical doctor, I begged -- BEGGED -- her to give us some drugs to make Joseph sleep at night.

She refused. "Address his gut issues!" she said sternly. "How well do you sleep when your stomach hurts?!!"

The thing is, Joseph always woke up happy and stayed happy, no matter what hour it was. It didn't seem that his gut was bothering him.

But we took the doc's advice and addressed his gut issues.

That year he started waking up only once a night instead of two or three or four.

The next year he actually slept through the night now and then. We started to notice a direct correlation between pooping regularly and sleeping regularly.

Now that he poops virtually every day, he will go a month or so sleeping through the night! Then we might have 8 or 9 days of waking up for an hour or so. Then we're back to sleeping through again.

Is it a virus cycling through that is waking him up? Is it knowing that preschool is coming up? Is his gut still bothering him? Are we doomed to this forever?

As for me, my sleep is still traumatized -- thanks for asking. I have given myself permission to continue to use sleeping pills until Joseph makes it through the night for three months straight. After that (if the day ever arrives), I'll start to wean off of them.

The thing is, sleep is a very primitive, basic need. What specialists and teachers often point to as behavior problems in our kids can often be traced simply to the fact that they are not sleeping well. When a kid (or an adult, for that matter) sleeps well and regularly, you will sometimes see an entirely different kid.

So we've come a long way with Joseph, but we're not all the way there yet.

I once went to a satsang with Kali Ma, a spiritual teacher. She spoke about the different things we take refuge in: alcohol, drugs, chocolate, the internet, etc. Her guru advised her to take refuge in only three things: God, Guru, and satsang (other spiritually-minded people). This was a major growing point in her spiritual life.

I have become sane enough with sleep that, when Joseph wakes up in the night now or pops up at 4:30am, I realize that sleep is not a refuge that I am often allowed. I give it all to God: my fatigue, my energy level, my thwarted desires.

And when I'm open to God like this, I feel Him holding me, giving me strength when I feel I simply can't make it.

So. Take refuge in God. I like it. I practice it. It works.

And sometimes I take a power nap in the afternoon. :-)