Saturday, July 26, 2008

In New Jersey

So here I am, with no boys to squish.

It is a strange thing to wake up with no boys in the bed, and actually a little chilly. I had a hard time sleeping at all without the JoeyAndyDad (hence all those very early morning comments on some of your blogs). I am reminded that I spend far too many evenings at the grocery store instead of hugging boys and watching them sleep.

Friday, July 25, 2008

All to myself

I had Joey all to myself this morning. Andy was at camp. We went to the post office. We went to the grocery store. We stopped by the farm and patted the cows. We got a toy at Target.

And I got to hug him at every opportunity. And kiss him on the head. And squish him, just him and me.

I gave him some extras, just for memory of Evan and his mom.

For us, life is good.

***BTW, I'm headed to Princeton, NJ for the weekend. Go ETS!

****EDIT: Service information for Evan and how the family prefers expressions of sympathy here.

Wednesday, July 23, 2008

Wordless Wednesday II: Retrospective

Wordless Wednesday: Westmoreland Berry Farm

Tuesday, July 22, 2008

Been there. Done that. (A Note on Alyssa Martin)

Now we have a police chief picking on a 4-year-old autistic girl.

I've had people in restaurants complain about Joey, and he wasn't even making noise. The irritation? He ate standing up. The people near us weren't the problem. People would cross the restaurant and tell me how rude it was and disruptive it was that my child wouldn't sit down to eat. Like it was any of their business.

We did have a disruptive period, between one with autism and one with SPD. We had a period when we didn't go out to eat much. We were afraid of people like Chief Rushton. People in authority who are ignorant, insensitive, and able to act on that. If you owned a restaurant and the police chief asked for someone to be removed from your establishment, what would you do? That is called "abuse of power." And it is a very, very real threat.

So Alyssa Martin, we are thinking of you and your family. You have the same human rights as everyone else. We're sorry you have to fight harder to defend and exercise them.

Who is Michael Savage?

I was sitting in the speech therapist's waiting room, playing blocks with Andy, when a friend (who has an ASD child), came in with the words, "Did you hear what Michael Savage said???"

And honestly, my first response was, "Who?"

Since then, I've done some poking around. Listened to some sound bites. Now my question is, "what is he talking about?"

I'm in an odd position here. Since I am active in the special ed community, the local autism community, and am the chair of parent sped advisory committee, I have a fair grasp of the kids who have diagnoses of autism, and even a few who are probably autistic, but haven't been diagnosed. I spend a lot of time sitting around OT and SLP offices, and see a lot of kids with ASD diagnoses go through. I haven't met a single child with an autism diagnosis (including PDD-NOS and Asperger's Syndrome) who are not ASD. Not one.

And what money? Most of these kids are trying get through with what they can. The school tells them its a medical problem. The medical folks, especially insurance, say its an educational problem. There is no magic "autism pill" out there. Most of these kids muddle through attempts to gain skills with whatever the schools begrudgingly dole out to them, and I assure Mr. Savage, that ain't much.

You know, I have a lot of people who tell me Joey isn’t “truly” autistic. He can talk. He can display emotion and form relationships. He can do a whole myriad of things I am told autistic children don’t do. But guess what? He’s still autistic. Spend a whole day with him. Watch him in a room of non-autistic children. If he never screamed in frustration again, he'd still be autistic. Clearly, demonstrably autistic.

How many times have I seen him next to non-disabled peers and have it really hit me in the face, in the stomach, in the heart how disabled he really is? And it hits so hard because most time, I don't really think about it. I'm too busy enjoying and praising and seeing all the wonderful things he can and does do, all the ways he is beautiful and wonderful and able. Joey is smart, funny, loving, adorable, sweet, thoughtful, joyful, silly, talented... and autistic.

Happy Birthday, Katie

Today is Katie McCarron's birthday. She would have been six years old. Our best wishes to her family, and know we are thinking of you. We are working hard to let people know that autism is not an excuse for murder, it is not a sentence of doom, and that people with disabilities are just as valuable and alive as anyone else.

Monday, July 21, 2008

Secret Hiding Place

The boys are on a Blue's Clues kick, so I got them "notebooks" at Walmart, and they are running around finding clues to draw in their "notebooks." Somehow, instead of crayons, they found pens.

Andy came up the stairs, his pen in pieces, in tears. I took all the remains of pen and assured him I could re-assemble it, and then attempted to do so. I got it all together, but it wouldn't "click."

Confused, I tried again. No click.

I took it all apart, examined the pieces, and tried again. No click.

Joey comes bouncing into the room. "Look, Mom! I have a person in my nose!" He proudly displays his nose, where all I can see is mucus membrane.

"Do you need a tissue?" I ask absently, setting each piece of pen in a little line on the counter. I hear a snort. Something small hits the floor. I whisk around to see a small bit of plastic being retrieved and displayed proudly.

"See? A person in my nose!" Joey chimes, pleased as punch.

Yes, it was the small missing bit of pen. Yes, I had to clean it. Yes, we had a discussion of not putting things up our nose.

Sunday, July 20, 2008

Sleepover at Grandma's: First Try

We're thinking in case of an emergency, it might be a good idea if the boys got used to possibly sleeping at Grandmas house. Since Andy has been a Grandma Boy lately, and didn't want to go home the last couple of visits, Grandma thought it might be time to start letting them have Grandma Sleepovers, where they spend a night at Grandma's house, one at a time.

For our first attempt, we asked which boy would like to stay with Grandma, and the volunteer was Joey. That was a surprise, but we went with it, because after all, he's the one that is going to have the harder time. We called Grandma, and it was settled. Joey was going for his first sleepover!

i helped Joey pack his bag, and talk about his trip. We talked about things he might do with Grandma, how this would be special time with Grandma, and how he would be staying there, and Mommy and Daddy and Andy would go home, while he stayed at Grandma's house. We made sure we had LittleBear and fresh pajamas and his good toothbrush.

We drove out to Grandma's, talking about what was happening. Andy started getting antsy and saying he wanted to stay with Grandma, so we had to assure him he would have a turn. The assurances were not altogether successful.

Once at Grandma's, we had a little visit, then it was time to go. Boys were hungry. Joey started saying he didn't want to stay today. We assured Joey we would see him in the morning. Grandma offered pizza for dinner, something Joey is starting to like to eat because of the new infatuation with Chuck E. Cheese. We hugged him and kissed him and let Andy say goodbye, and we were off.

We drove out of sight, waited a few minutes, then called Grandma.

All was not well.

Apparently he returned to Grandma, shaking, and talking about "the machine has left me" and "going to the beach!" Grandma asked us to come back. He was holding together- barely. He was unhappy. This wasn't fun.

When I returned, I tried to act casual. Joey was hugging Grandma, and she was assuring him that we wouldn't go to the beach without him. He was pretty red. As Grandma pointed out that I was back, he looked at me and said, "Mommy! Why did you come back?" All the sudden, he wanted to stay at Grandma's. Only he didn't want Mom to leave. Or "the machine" (which is a new name for the car, apparently). He was especially upset about the car leaving. Mom and Dad and Andy could go, but not the car.

It was decided that Joey needed to go home instead of having his sleepover tonight. We'll go back and have an adventure tomorrow, and then try another sleepover another day.

I'm thinking there were a few of mistakes on my part.

1. Not enough warning. Joey may need several days' notice, at least for the first couple of times. Of course, in an emergency, there would be no notice, but I think he held it together enough that if we really had an emergency, he would be OK. Not happy, but OK.
2. Not enough prep. We needed to think about exactly what Joey would be doing, so he could get right to it, and distract him from us leaving.
3. Too big a leap. We might need to do this in small steps. Have a "campout" at Grandma's that is a long evening instead of an all-nighter. Work up to a family slumber party, first just a late night, then all night together. Maybe have a few "afternoons with Grandma" where he spends a couple hours alone at Grandma's, but we come back for him. Then have our sleepover.

When Joey was a baby, we used to leave him with Grandma a lot. I was working at a couple of distant campuses, and so Grandma would take the baby for a while. He even spent the night with her once. But that was a long time ago- he probably doesn't even remember it. As he got older and needed more routine (plus having a second boy), we just had Grandma come over here to watch boys. It would be nice to have an option for them to stay there, and enjoy the wonders of being with Grandma. Besides, Grandma's house is surrounded by woods- boy heaven.