A Warm Breeze

John spoke to his daddy tonight. It almost feels like I dreamed it, but he did so several times and there were witnesses. They faced each other on the couch, one of those doodlepro books — The Backyardigans, I think — between them. Dad started to randomly draw shapes while John flipped through the book part. All the sudden, John paused to watch and said "Triangle." We looked at each other, astounded. Erase the pad, try another shape. "Diamond." Did we imagine it? "Rectangle." Erase. "Circle." "Square."

Let's try numbers: 1, 2. "One, two." Erase: 3, 4. "Three, four." Erase: 5, 6, 7. "Five, six, seven."

Letters of the alphabet? "A. B. C." Out of sequence? "P. G. X."

Then, as he often does, John placed his hand over his daddy's and we thought he would motion him to stop, or impatiently pull his finger. But instead John guided his dad to draw a circle. It wasn't a perfect circle, and he said "oval." Then he added two dots for eyes and a smiley face followed by two semi-circles for ears.

"Monkey!" he said, laughing. He lifted his eyes, looked directly at his dad, and repeated "MONKEY!"

Oh, the sound of his voice! So similar to Sam but yet uniquely his own. He started uncertain at first — quiet and low, a little monotone. But as he continued, his voice was like a warm breeze, stretching and reaching for us.

I cry a lot.

The pride on his face was so similar to when he slept through the night in his big boy bed. I am struck, over and over, by how much I don't know, that we don't know, about autism. How many times has he wanted to say something but was unable to form the words? How many times has he given up with frustration? And how many times have I not seen him struggle?

Because tonight it is obvious to me that he longs to connect with us. It is obvious to me that there is so much going on in there.

The Worry Mom

The Summer Camp registration deadlines are completely designed to send someone like me over the edge — someone who continually and irrationally worries about things that may or may not come to pass, driving her husband crazy with her ability to work herself (and him) into a tizzy based on very little information — but a lot of precedent.

The word around town is that if I want to get one or both boys involved in a summer camp, the time to act is now. My ability to do this is complicated by not knowing if either will qualify for ESY services until their May and June IEP meetings. You'd be surprised to hear that I'd rather pull out my toenails than pick up the phone and just ask (see above). But I did, at last, because who is their #1 advocate? And my husband begged me, and because — my god, why shouldn't I be able to do that. The general consensus is that John will most likely get ESY but that Sam may not. (ESY being granted only "if skills acquired during the school year could be lost during the break").

There is a whole other tangent I could go off on here — how there's a listserve for parents of kids with special needs in our county and how I hear — daily — about the angst that others are going through RIGHT NOW with respect to services for those kids. Sometimes I feel like I'm biding my time in line, waiting for the school district to come right up to me and say "Your turn! Screw you and your special needs kids. No, you cannot ask for ABA (or speech or what-have-you). We are out to get you." But I'll save this tangent for another post.

So ESY is just four weeks during the month of July. We are flanked on either side by three vast and vacant weeks with No Order. No Structure. No Routine. While that is manageable for Sam, it is unprecedented for John and has kicked the Worry Mom into high gear. Do we want to see him stop singing the Backyardigans song? Do we want him to build on the latest flurry of words yelled out: ball, snowman, foot? How can I live without the amazing eye contact, still fleeting but so beautiful?

I've now logged dozens of phone calls to different speech and language camps, OT camps and sensory integration programs. I am shocked to learn that most require a hefty screening fee just to meet us whether they accept us or not. I am discouraged to learn that there doesn't seem to be a camp suitable for where John falls on the spectrum — all require a certain verbal ability that he has not mastered yet. So it looks like we are going to set up another home ABA program to fill in the gaps while Sam goes to a camp in the mornings.

I'd start worrying about how we'll pay for all this, but this Worry Mom knows when to shut down for awhile.

Yes We Can

I've been sitting back watching the primaries and caucuses unfold and while I'm a democrat through and through, I've found myself bouncing between Hillary and Obama.

I can't recall ever feeling so torn between two candidates.

I've scoured the web looking for their positions on autism and I've found Autism Bulletin to be really helpful in that regard. There are plenty of people in my life who have been trumpeting Barack and I'm starting to sit up and take notice.

One of them just sent me this amazing video.

I know either will be a welcome change from what we've got, but one represents the past.

I want more than the comfortable, the familiar. Lately, I crave hope.

And I'm starting to believe.