Learning Outside the Bathroom Door

I was just headed downstairs to go for my daily walk when I heard a voice from the bathroom. I stood outside the door and could hear singing. It was Phil. After listening to a few bars of la, la, la I heard him say “It is March and after March is May…no, no, April. After March is April!” I occasionally overhear conversation. Today I was waiting for more when the door swung open and I was caught. He stood there mostly dressed, acting like it was no big deal that I am always standing outside the bathroom door. He leaned over to let me smell his just-washed hair. “Ahhhh, so fresh!” I told him. “Yes, I am fresh.” he will sometimes tell me. This smelling of the hair has been going on for years ever since he switched to Suave shampoo, green apple, or White Rain, apple blossom. Now it is tradition and I am the only one allowed to do the sniffing.

My Favorite Show

It is 4:30 and I just went downstairs for a little snack. Phil was watching TV—of course. “Turn off the TV!” “Rats! (he stomps his foot and laughs) My favorite show!” He was watching Emeril Live. If I go down in the evening, his favorite show is Family Feud or Knight Rider or The A Team. In the morning it is The Price Is Right or Mister Roger’s Neighborhood which I truly believe was his all-time favorite and which is no longer shown at 11:00 a.m. daily. I just looked up the schedule—it is only shown on Saturday mornings at 6:00 and Phil is, thankfully, still sleeping.

On Having Fragile X Siblings

On Tuesday, August 1, 2000 one of my three unaffected (by fragile X) children sent me an email. I wanted those three to articulate how they felt about having siblings with fragile X, so I sent them an email asking. My #3 son responded.

“My thoughts…I’ve always thought that I’m a better person as a result of having Clark and Philip as my brothers. They have definitely taught me to be patient. They have taught me to be more loving. Phil has taught me the true meaning of a good sense of humor. Clark has taught me to be responsible…

Having brothers with special needs has taught me to be nicer to people in general. They’ve influenced both myself and many of my friends to be kinder to and protect those that need help. I’m sure that Du (a good friend) is a better person for knowing Clark and Philip.

The negative—which really isn’t a negative—are the ‘what if?’ thoughts I’ve had through life. I remember being 13 and wondering what it would be like if Clark wasn’t mentally retarded and would instead be a high school senior with a drivers license…would he have been willing to pick me up from school or take me to the mall? Most likely. And what about Philip, would he have taken half of Adam’s time in my life or would the three of us just have hung out all the time. What if Clark was normal and married with a couple of munchkins?

I don’t feel a lot of sadness when doing this…instead I think it’s kind of fun.

More and more I think of what my relationship might be like after I die—will Clark and I go off and play golf together just as normal brothers do? Will he thank me for being understanding of him and for being good to him? Will he tell me I could have been nicer? Done more? It’s a bit of a motivator to treat him as good as I would treat Adam or one of my best friends.

Sorry for running on—I guess as you get older and move away from home, you give more thought to your relationship with your family.

Talk to you soon Mama!”

Blood Draw

During the 30-minute drive south for a blood draw for Clark and Phil, needed to complete their physicals from a couple of weeks ago, I could easily hear from the back seat
“You’re it.” and a slap.
“I’m not playing.” Slap. Slap.
“Stop it.” Slap. Slap.
“You’re gel lease (jealous).” Slap. Slap.
“Ow.” Slap.
Now it was my turn.....to intervene. “Both of you stop. Phil does not want to play tag.” They stopped. We dropped Paul off for his weekly racquetball game and I took “the boys” to the free-standing clinic. Phil’s anxiety kicked in while we were standing in line waiting to check in. One minute he was in line with me and the next minute he was gone. I turned around and saw his laughing face on the other side of the glass entry door. "This is great" I thought "he is out of control." Clark stayed by me but was looking for interaction with the receptionist “I can run. Right, Mom?!” “Sh, Clark, just sign the form.” Phil reappeared at my side in time to sign his form. We didn’t even have time to sit down when both were called at the same time. Clark would give blood out of both arms; he has no fear. Phil, on the other hand, cannot stand needles or blood. Clark went one direction and I went with Phil and got permission to stand by his side. He had asked me earlier if I would hold his hand. I did. As the phlebotomist started to clean the needle area Phil jumped. She took notice that he was anxious and after that explained before she did anything. “I need to put this band around your upper arm. Over your pushed-up coat sleeve is fine. And now… (in went the needle) we’re almost done. That’s it. We’re all done.” She was cheerful, understanding and very fast and I was proud of Phil. We celebrated a successful morning by going to The Dollar Tree where both bought a lint roller and socks for Sunday.

Too Much Time to Watch TV

In an effort to help reduce the amount of time Clark and Phil spend watching television Paul and I have been working on a list, a list still in progress which is usable now. They have their daily chores but since they are not employed outside the home they need more. They need chores that

1. Do not require a lot of instruction and
2. Do not require constant supervision

If conditions 1 and 2 are not met the chores become ours and, frankly, we are not looking for additional chores for ourselves at this time.

This list still in progress is posted so that when Paul and I become aware that the TV has been on far too long we can scan the chores and give Clark and Phil an alternative activity. Phil will jump to it and Clark will continue to sit on the couch even though the TV is now off.

So here is our list which does not require a lot of instruction nor constant supervision. Even if the job does not measure up to our standard

1. It doesn’t matter because it will be cleaner (or better) than it was and
2. Over time it will eventually get thoroughly cleaned and
3. They will increase their performance abilities.

Chores
Clean window sills throughout the house
Sweep kitchen floor
Clean inside doors
Sweep garage
Weed
Blow off porch
Clean baseboards
Clean grout in showers
Water flowers
Clean gutters on the street
Clean bathrooms
Clean dust off tops of books with portable vacuum
Clean microwave
Clean shelves in fridge
Clean fridge doors (outside)
Clean dishwasher, oven doors
Clean top of fridge
Clean bottom cupboards in kitchen
Clean garage doors
Clean front door
Clean glider

When I have time (and even when I don’t), I like to read, but in their defense, Clark and Phil can only read a few words so the TV becomes not only their relaxation but something they enjoy.

Working in the Yard

"Great job!"

"You’re the best."

"Thank you very much."

"How did you do such a good job?"

"You’re amazing."

"I’m glad you’re my son."

"What would I do without you?"

Words like that were repeated many times yesterday as Clark and Phil shoveled four yards of beauty mulch into wheelbarrows to be distributed to our flower beds and two yards of soil to cover the front yard so we can reseed. I know the importance of sincere, encouraging words but they are particularly sweet when either Clark or Phil says “Good job, Mom!”

(Here is Phil enjoying a smoothie of banana, soy milk, Splenda, frozen strawberries and mangoes, vanilla, and a handful of fresh spinach with his sister.)

The Card Not Mailed

The addressed and stamped envelope to the Starbirds stood propped up in the window sill for days. Yesterday Paul commented “I wonder why Philip doesn’t take this down to the mailbox. He is always so quick to take mail down.” It was still there this morning when I went into the study. We always put our outgoing mail on the window sill by my desk and then Phil takes it down to the corner of our street and puts it in "outgoing mail". I picked it up and noticed that the flap had not been sealed. I now knew why Phil hadn’t taken it down; he was waiting for us to put something more into the envelope. I took it downstairs and told Phil I knew why he hadn’t mailed this yet. He said something to me that I could not understand at all--not a word. “What did you say?” He repeated it but I still had no clue what he had said. “What?” He repeated it again and finally I could begin to understand a few words. On the fourth try I got it. “The Starbirds do not have a mailbox” he had been trying to tell me. That is the real reason he had not mailed it. Phil is very observant. He notices burned out taillights of visiting cars, where I put my car keys, where a recently purchased grocery item was put. I am usually more astonished when he doesn’t know something. I have often said “Everyone needs a Phil at their house.” Today I wondered why he said they do not have a mailbox. Here is my best guess. The mailbox is across the street or it is in front of another house a few doors down. This much I do know; it is not where Phil thinks it should be so therefore “The Starbirds do not have a mailbox.”
After much discussion and explaining that they must have a mailbox, I finally convinced him to take the card to the mailbox.

Cousin Ann

When I finally went into the study last Friday at 8:00 a.m., I could smell something good. There sat Clark dressed in jeans and ready for the day. I smelled his face. “You have already shaved?” “Yes” he said with a sweet smile. This is very unusual behavior for Clark. Most days he stays in sweats until he has been reminded a hundred (well, maybe not quite that many) times to shower and shave. Phil, on the other hand, gets up on his own, makes his bed, gets dressed, goes for his walk and then comes back to shower and shave.

“Clark, why have you dressed and shaved so early?” I found out later in the day from Cherlyn that he had gotten up at 4:30 (he does not have a good concept of time) to shower and get dressed.

“Because your cousin is coming today.”

He was right. Ann, my first cousin who lives two hours away and who Clark and Phil met for the first time in December, had called me the day before to tell me that she would be dropping a box of pictures by our house. Clark had overheard the conversation.

She seemed so comfortable around Clark and Phil when we met her at the nursing home where my aunt (her mother) had just moved. Phil is always interested in cars and so one of the first questions he asked Ann was what kind of car she had. Instead of just telling him she asked him if he would like to see it and then took him out to the parking lot. I must admit I am always amazed when someone seems so immediately comfortable around Clark and Phil. How would I be if I didn’t have children with mental retardation? Would I be uncomfortable and not know what to say or do because it was outside my realm of experience? Probably. I have watched family members, friends and acquaintances through the years and have noticed their different reactions. I think I am more amazed at those who are friendly and include them in conversation and activities. When they were young and I could sense someone was excluding them or making unkind comments, I was hurt. But with the passing of years I have come to understand better that most people don’t want to be cruel; they just don’t understand. Some people change, become friendlier and more comfortable, as they get to know them. And that is a good thing.

What happened???

I went into the kitchen one afternoon to prepare dinner which was to be chili and rolls, rolls I had taken out of the freezer the day before. When I looked for them they were gone. I knew who had eaten them, all of them. And there he was sitting on the couch watching TV. “Philip,” I said with sternness in my voice “I can’t believe you ate all the rolls. They were supposed to be for dinner tonight.” He burst into unexpected tears and pointing at Clark said in a mimicking voice “Hello nosey boy. He, he said it. Clark said nosey boy. I don’t like it.” And with that loud exclamation he got off the couch and tried to leave the room. The rare tears were not for remorse for having eaten our dinner rolls but because Clark had called him a name, nosey boy. “Clark, tell Phil you are sorry. He does not like being called nosey boy.” Now it was Clark’s turn to display anger. “Clark,” I repeated “tell Phil you are sorry.” Clark sat there silent, sulking and muttering. “Clark! Tell Phil you are sorry! You are not eating dinner until you have apologized for calling him a name!” Finally the lame apology came and was lamely accepted by Philip who still showed absolutely no remorse for having eaten the dinner rolls. We had crackers instead.

Here is a note I received from Phil after the explosion. Interpreted it means--Mom, Clark called me a nosey (none) boy (boys) and then he signed it Phlip (even the bank accepts that spelling).