Life with Rodney

My stepson, Rodney is a joy!. A Downs Syndrome boy, sparkles our day with conversations of repeated exclamations. "Cold outside", at least 4 times before 10 am. Or "he's bad" looking outside and pointing to the weather."

"No, Rod, it's bad, not he's bad"

"It's bad" he chimes in, but 30 minutes later, it is "He's bad".

"Oh well" he repeats innumerable times, waiting for us to make a response.

"Okay", says Jack, his dad.

"Well, I don't know" Rodney sighs. "Well, I don't know".

Jack has several pat answers that satisfy Rodney. "You don't need to know, dear" , or "Well, I know, so it's okay" , or "Neither do I, so we both don't know."

Rodney is happy for an answer to his comment which doesn't seem to need a comment. But Rodney insists on one. Jack has learned to just answer with one of the stock answers. He's also learned that if an answer is not forthcoming, the "I don't know" will continue.

Another one of Rodney's great comments is "Who cares?" Last week in the car it was repeated ad infinitum all the way home from my brother's house, a 3 hour trip. We went through all the people who probably did care, or didn't care, including his little dog Tobey. "Tobey cares."

Sometimes the phrases can be combined like "I don't know, and who cares.?" When Rodney is not there to say this over and over for us, we chuckle when we come to a situation, where the phrase fits perfectly and we utter the response "Who cares?"

Now Rodney is fascinated by wrestling. He watches all the programs on the TV (except the Pay For Views), can find the channels and knows just what nights they come on, and what time. Time usually means nothing to Rod, except he knows when lunch is supposed to be (12-oh oh) and when the wrestling is on. We just got him a subscription to the two wrestling magazines he loves. The problem is he doesn't understand why they haven't come in the mail yet. He rushes out to the mailbox everyday expectantly waiting for his mags. Why DOES it take 6-8 weeks anyway?

The Beach Boys--Rodney has ALL the CD's and tapes that have been put on the market. Jack had taken Rodney to a Beach Boys performance at a local fair maybe 10 years ago. He has been their biggest fan since then, and yells "Beach Boys" when he hears it on the car radio. A "Beach Boy's concert, Daddy?" means "When can we go to another one?" , or "California?" yet another way to ask about seeing them.

"They're all in a nursing home now, Rodney." is Jack's response, never trying to give too much information to him as Rod's cognitive abilities are quite limited, and a little too much information can set off a several day questioning marathon that can't be stopped.

Rodney and I went to the movies when "Charlie and The Chocolate Factory" first came out. This was just his speed! The part he focused on was the Oompaloompas. But with his speech, it came out "Toofahs". So the name of the movie in our house became "Toofahs"

"I want "Toofahs" Toovie" became his manta for the next several months. (this is translated I want the Charlie and the Chocolate Factory movie).

"You can ask for it for Christmas because the video will be out by then, probably" , we repeated to Rodney, to assure him that he'd eventually get it and we did have to allow time for the video to be out on the market. That was far enough away to assure that. (His birthday in October would have been an unwise time for us to have selected as if it wasn't out by then--way too much to explain then).

Well, we were able to purchase that video for him in December, just in time for Christmas. We also bought a couple of other videos we thought he might like, so under the tree were three videos. We passed out the presents and he opened "The March of the Penquins".

"Where's "Toofah.?" Rodney said, putting the video aside with an uninterested toss. The next package was not "Toofah" either, and the look on Rodney's face meant that Jack had better scramble and find the right package immediately and dispense with the niceties of everybody getting a turn with their present. It was found, opened and, with Rodney happy, everyone else could open their presents happily.

"Concert?" is a question asked two or three times a day. Now this doesn't exactly mean a concert though. It could refer to a concert, as he loves to go to concerts, and music festivals. But most likely it means "Are we going to church on Sunday?"

And "Preach" refers to the minister Jerry. Sometimes when things aren't going his way, and he's usually unable to articulate what's bothering him, he will just say "I'll tell Preach".

But usually when these situations happen, and we don't know what sets them off, he'll come up the stairs and say "I'll tell the cops." It is usually at such an inappropriate time that we just smile, and Jack answers him with a couple more of his patient answers. "Get your coat on and go down to the corner. One will probably drive by in the next hour." or " Get the phone over here and I'll dial the number for you." Of course Rodney answers "No way, Jose."

One night last year when Jack and I were first married and Rodney and Jack had moved here, we got a phone call about 1 am. I answered, and the woman asked if Jack was there. From Jack's side of the conversation I could hear……

"Yes, I'm Jack. Yes, I have a son, Rodney. No, as far as I know, he's in his bedroom asleep. No, his mother died about ten years ago. No, he doesn't usually use the phone."

The caller was the 911 dispatcher and Rodney had evidently dialed the 911 phone number at the downstairs bedroom. According to the dispatcher, Rodney had told her "Mommy's dead! Mommy and God are gone." And he was crying besides.

We took care to unplug the phone in that bedroom. But we're happy to know that in an emergency, Rodney does know the 911#. And we're happy to say, Rod has adjusted to his new addition (me) to his family and is very attached to me.

Speaking of getting attached, I have a little Pekinese dog that I've had for 10 years. The instant that Rodney met Tobey, he was attached to him. I know Pekinese dogs are supposed to be royal lap dogs but to not have your feet touch the ground except to go out to do your business twice a day, is what I call the height of royalty. Tobey and Rodney watch TV together, sleep together and listen to CD's together. And it must be that Tobey doesn't seem to mind, as he never tries to make a getaway. At dinnertime, Rodney leaves him in his basket, and Tobey stays there until Rodney returns.

Rodney has super hearing and smelling powers. The opening of a microwave door, the beeping of an oven finishing its job, a refrigerator opening, a piece of toast popping up, all seem to be signals for Rodney to emerge. "Here I am", he announces with a big grin. "I'm back", he yells, coming up the stairs. "Smells good, Carol", "Three forks?" or "Want some pop?" are indications that he's ready to hurry the eating process along by helping set the table.

"I'm full," muttered after dinner means there's no longer anything left to eat. I've learned to put on just enough for us to eat a reasonable amount. Otherwise the entire mac/cheese casserole will be consumed by Rodney. I have no problem getting that boy to eat. He likes everything I make for him. Three times at yesterday's dinner, he got up and came over, flexed his arm muscle for me to feel. Eating spinach does that to him. And he's open to ethnic dishes from around the world. Favorite culinary regions that he'll eat mounds of are Asian, Mexican, Italian, or American comfort foods. Anything with any kind of sauce on it, or anything containing potatoes in any form is highly desirable. In fact his favorite breakfast food is pizza, or potatoes. But strangely he's self limiting about calories. If it's a big heavy meal, he'll forgo dessert. "I'm fat," he says as he pushes away from the table and takes his plate to the sink. (Rodney is not fat at all and in addition, is in perfect health for a 30 year old).

Rodney has a lot of friends that talk to him. We can hear him downstairs having conversations with different voices explaining or answering his questions. These are his Power Ranger figures that he collects. He usually gets 1 or 2 every birthday, Christmas or Easter. An occasionally one can be had at a garage sale that he and I go to on Saturdays. The Power Rangers are kept in plastic grocery bags, replaced every few days as they get holes in them. The Rangers are hauled out and placed on the floor around the TV every morning, hauled out to the car if we go to the store, taken to the respite care worker's house, and at the end of the day, they are taken into his bedroom to lay at the foot of the bed. They have very broad shoulders and take the blame for anything that's done that gets a reprimand. They seem to know the answers to the incessant questions he asks us, for when we have had enough questioning thrown at us, we don't answer, and his Rangers shout out the answer to him in one of their amazing voices. When three or four of them talk to him, and he answers, it's time to get out the recorder.

We took a trip after Christmas to my daughter's house. She has two small children, ages 7 and 3. If we were worrying about how Rodney would handle the trip and the visit, we needn't have. With the portable DVD player in the back and his "toovies", the two day trip out there was a breeze. And there's nothing Rod loves better than eating out. Burgers and fries, tacos, pizza. On the occasion that we stopped at a restaurant that had pictured menus, there was a long discussion with Rodney about making up his mind. We're now selective about going into those kind of restaurants.

The sledding down the hill had Rodney and the little ones giggling and squealing all the way to the creek. Trudging back up the hill, Rodney had to use all of his skills to get himself up, but he was ready to shove the sled down with the next rider whose turn it was. The littlest one hugged Rodney round the neck upon coming back in for hot chocolate. "She's cute", he grinned.

On the way back we stopped at my brother's farm in southern Michigan for New Year's Eve. After a week of perfectly delightful behavior, we had a near meltdown. After all the New Year's snacks were eaten, we told Rod it was time for him to hit the hay. No, he relayed he'd be sleeping on the couch right here.
"You've not got any choice here, Booboo," Jack said. It's way past your bedtime and you need to go up there."

"Couch" was repeated several times along with Rodney taking the opportunity to perhaps mention getting a few magazines or DVD's out of the deal with a bribe, and Dad holding firm. Forty-five minutes later, and several conversations with the Rangers all the way up the stairs, and he finally made it to bed. Next morning all the struggle was forgotten. Rodney holds absolutely no grudges.

Coming up the stair right now, Rodney is calling "Carol/Daddy". Sometimes it's "Carol/Daddy/Tobey", or "Daddy/Carol/Tobey/Karen". Karen happens to be the respite care worker whom he loves. On the way home from Monica's house in Vermont, he added a new name to the list--

"Daddy/Carol/Tobey/Karen/Monica". I imagine she made the A-list with all that good food she cooked for us.