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.

T's going to drive his car!

Linda was telling me about a song Tomas loved in preschool circle time. It's called "Drive My Car" by Laurie Berkner, a performer I've seen on Noggin. I like her music. Anyway, the teacher taught the kids a series of motions to go with the song. We got the CD and Tomas, even though he'd had a very long day, had enough energizer bunny left in him to do a laid back performance for us.



I’m going to drive my car!

It was a busy day because yesterday was the first day of summer vacation and a gorgeous day to boot! In the morning, I took him to a playground near our lake and he enjoyed running figure-8s around the play equipment. I tried to get him to be a train (by chugging and going choo-choo) or a plane (using my arms as the wings) but he shook his head no. He just wanted to run.

After lunch, Kristin, Tomas and I went to check out the pool club we joined for this summer. We had a great time although I was worried we might not be able to coax T into the water. He loved watching the kids going off the diving board but hesitated to go into the shallow end of the pool. There was also a really neat toddler pool. I lured him in by sitting in the water and saying it was like a big bath tub. Once he was in, that was it. He loved it!

Today my legs have muscle spasms but I think that's because of the loaner car I've been driving while my van is fixed. It's too low to the ground or my legs are otherwise cramped in it. I'm taking a muscle relaxant which is making me feel goofy. And just a week until our vacation!!!!!!

My Cup Runneth Over

I'm listening to yahoo--hits of 1967--to relax after a very hectic day. I haven't heard this song in such a long time. It's sung by Ed Ames and he has or had such a lovely voice! 1967 was the "summer of love" but I remember listening to a lot of music by singers like Ed Ames. One of my favorite songs was "My Cup Runneth Over With Love".

I could say I feel that way sometimes. It helps when I have a crappy day to remember that.

Yesterday was a nice relaxing Father's Day. We'd decided to go to Outback Steak House for dinner and I'd made reservations several days ahead of time. I told him there would be 7 in our party and the guy said, "You guys can sit at a booth?" I said I thought so but that we're mostly big people so if we could get a table that would be better.

When we all arrived, it was very crowded. Tomas was entranced with the doors as usual and didn't like being in the crowded lobby. His dad thought it would be a good idea to go back outside to hang out but Linda went out after them. She figured she wouldn't know how to find them when we got called. See...there was a list of people who'd made reservations. And the wait if you hadn't made a reservation was 2-1/2 hours!

So Linda carried Tomas in, kicking and screaming. Nothing seemed to calm him down so Kennan took his hand and led him to the men's room. Meantime, we were squeezed into a booth. Yeesh. The smallest people were Kennan and Tomas and I looked at the teeny amount of space left after the rest of us hefties squeezed in and I wondered how they'd fit.

We figured we'd make it work though and we did have a very nice dinner.

There was a very down side to it all though. Some man came into the men's room and said loudly if that was his child he'd beat the crap out of him for acting like an animal. It was all Kennan could do to keep his composure.

Acting like an animal.

Why are some people so damn ignorant?

I've read that one of the problems kids with autism and PDD have is that all sensory input comes into their brains at once and they have trouble screening stuff out. I was a little on edge with the crowd and noise--what was it like for Tomas? I wish I had that guy in front of me now because I'd like to give him a smack in the face. How's that for acting like an animal?

But like I said, that was the only down side. Otherwise, the food was great and the company too!