PDD-NOS and Our Grandson

From time to time I've written about our grandson, Little T, and about his diagnosis of PDD-NOS, which is the acronymn for pervasive developmental disorder, not otherwise specified. Now, what kind of label is that? Basically it means Little T has some typical signs of autism but not all and some of his "symptoms" are "atypical". Yeesh. All I know is, he's my grandson, he struggles sometimes but we all love him very much.

I've read up a lot on autism and autistic spectrum disorders and have become familiar with some of the terminology. Sensory defensive: that means that Little T doesn't like certain textures of food (like applesauce) or touch (like mud or wet sand). The food part is easy enough for him to deal with--he just shuts his mouth, shakes his head firmly and says "uh-uh!" He might give us the "talk to the hand" sign if we get really pushy offering grapes or blueberries.

Mud, sand and other yucky stuff can be another issue. Actually, I'm with him on this because as I've gotten older I've become way less tolerant of sticky stuff on my hands. If we have fried chicken or other finger food, that's the last thing I'll eat because immediately afterward I've got to get up and wash my hands--not just wipe them. So there's no bite of potato, bite of corn on the cob, bite of chicken for me. So I can understand when T gets distressed about crumbs on his fingers. He's gone from frantic (last summer) to wiping his hands on my slacks to using a napkin (this summer). If his hands still feel dirty or sticky, he clenches them in fists. That's a signal to me he wants to wash his hands.

Shirt labels aren't an issue anymore because we don't buy them that way. We also don't buy button down shirts with collars or tank tops. He likes tee shirts or polo shirts as long as there are no buttons. Elastic waist pants are easiest for him because buttons and snaps still confound him. He wants to be able to dress himself and he will not give up. He's rolled from one side of the room to the other, screaming in frustration at himself because he can't get the snap or button, but he refuses to give up. Gritty little guy, I admire that quality!

His socks have to have grey toes and heels and they have to be white--no colors allowed. They also have to be ankle cut, none of that tube length style, thank you very much! Those little stringy things that come loose from socks and those little fuzz balls you get between the toes are enough to drive him right up the wall. Also, the velcro straps have to be perfectly aligned. He's taken his shoes off repeatedly and rolled all over the floor in a fury when he can't get them to be just so.

Electronic doors continue to be a sore point. Sometimes he is okay when we go shopping, other times he has a meltdown because of those doors--it could be anywhere, any store. There is something about the motion that does something for his brain. Before intervention, the only way he'd play with anything was to rotely move objects back and forth--imitating the sliding doors. Well, now he has much more imaginative play but he is still hooked on those doors.

When we get to the doors, we can't go in if they are in the process of opening or closing. The doors need to be closed and then we can go through. If he isn't in the shopping cart, he's not able to leave the doors. He has to go back and forth through them. If the doors are propped or stuck open, he might have a meltdown. It's not the way things are supposed to be. If other people cause the doors to open as we're going through, we have to stop or he has a meltdown. The doors have to be closed and we have to be the ones to open them. Okay, so we can't always do that and inevitably, there is a meltdown to be dealt with.

Take today...TB and I went to Toyota to drop off his car to have an oil change. Now mind you, there are no automatic doors there but another thing is that T has to be the one to open the door to go in. A bunch of salesmen were on their way out and one held the door open and T became very agitated. He yelled and put his hand up. "He wants to be the one to open the door," I explained and the guys understood so they came out and the door shut. T opened the first door and was happy.

Now there's another door and more salesmen on the way out. One goes to open the door and T pushes against it to shut it. We explain again he wants to open the door and the men start chuckling like a couple of hyenas. One of the men began knocking on the door kiddingly for T to open it which just made the little one madder. TB picked T up and carried him into the service area, kicking and screaming his lungs out.

Some people might think he is spoiled. If we do explain about the PDD, then we get the condescending looks of pity and the "oh, he doesn't LOOK autistic." What does autistic look like? What, the rocking? The flapping hands? Please. And what's with the looks of pity, don't look at us like that! So most of the time I'd rather say nothing and let people think we spoil our grandson. Pfft.

TB was going to wait for his car and it happens mine was there already and had been serviced. I'd explained to T that while we were arriving in Pop-Pop's car we would be leaving in Nana's. T was all cool with that and didn't mind walking with me hand in hand, leaving Pop-Pop behind. As we were passing his car, though, a mechanic got in and started it up. I guess that set the little one off. Who was that strange man getting ready to drive off in Pop-Pop's car and why weren't we in it?

I tried to explain again that the car was going to be fixed and that we were going in Nana's brown car, see, here it is right here. He wanted none of it and so I had to pick him up and carry him to the car. He was madder than a wet hen and let me know the whole ride home, scolding and yelling and refusing to be cheered up when I'd point out the stop signs, green lights, and so on. I got "uh-uh!" and the hand and lots of angry looks.

I guess the one thing that frustrates us all the most is that he is still mostly non-verbal. He is beginning to say some words but they're not clearly recognizable. He does a lot of pointing and if there's a lot of stuff around and we can't figure out what he's pointing to, he can become very frustrated and angry.

It is what it is.

Still, I would have to say that things are getting better for nana's boy as each week goes by. The other day we were watching "Dora The Explorer" and he said, "map." I was so delighted I about danced him around the room.

Okay enough for now.