27

"On the day that Clifford was born, on the day that Clifford was born, on the day that Clifford was born,the angels sang and they blew on their horns, and they danced, they danced; they smiled and raised up their hands on the day, on the day that Clifford was born." --song from Cliff's Red Grammar CD.

Remembrance is sweetest oftentimes from a distance. We can recall with more clarity the wonderful and essential parts of a memory, especially when that memory, once bittersweet, has released its hold on the bitter aspects of that time.
I turned 27 in October of 1984. I was five months pregnant with my first child. It was a time of such excitement among my family members. There had not been a baby born among my siblings for fifteen years. This baby would be only the second grandchild/nephew. The whole universe revolved around the anticipation of his arrival.
Naturally, once he got here, and everyone got over the shock that he had Down syndrome, the spoiling began in earnest. Little blue shirts and tiny socks, teddy bears and a clown with a sweet face, the softest blankets, and all the accoutrements that a baby could need--it was all somehow contained in our tiny apartment on Leicester Street.
He learned his first sign at one. Milk. (take each of your hands and squeeze them, open and close, as if you were milking a cow, alternate as if you have one cow's teat in each hand) Other words followed--snack, juice, mommy, daddy, more--until by the time he was four, he had acquired a bank of approximately 350 words.
When he learned to walk, what a celebration that was! It seemed to take forever. When he finally took those first tentative steps alone, he was
twenty-two-and- a- half months old.
He started preschool at two, kindergarten at seven, middle school at almost fifteen, and then spent six years in high school. He was a pioneer each time, being the first student successfully educated in inclusive classrooms in our town. His greatest success was never academic; it was in everything he taught to others.

His birthday is today. He has now reached the age I was when I gave birth to him! Where did the time go? The days seemed long, but the years flew by.

This morning I went to wake him for work. In repose, he appears almost angelic, not at all like the bear he was when he went to bed last night. As I lifted the blinds and let in the sun, he sat up straight from a deep sleep, the way he always wakes up. There's no in between--just like that, from prone to sitting up in two seconds flat.

"Good morning, Cliff", I say softly. "Today is February 28 and today is your birthday." He sits up a little straighter and smiles sleepily, reaching one arm out to hug me. His birthday is the best day of the year, better even, than Christmas. We choose a favorite shirt to wear to work. He loves his job at the cafeteria at our local high school, where he helps hand out milk cartons and water bottles to the students, loads up the cart to bring the snacks where they belong, and fills up the juice machine. After he graduated in 2007, the cafeteria ladies couldn't bear to let him go. He's been working there twice a week ever since. Sandy and Joanne and Lou will wish him a happy birthday and give him a ridiculously age-inappropriate animated stuffed animal(which he will love).

The Taylor tradition is to take the birthday boy or girl out to dinner at the restaurant of their choice. TGIFriday's chicken and pasta bruschetta wins out. Last year the staff thought he was so adorable, his dinner was free.
Afterwards it's home for his favorite lemon cake and a pile of presents so high that my husband will look at me and sigh; I confess to going overboard with the  charge card.
Cliff will sit in the lotus position (he's oddly flexible this way) on his chair at the head of the kitchen table. This seat usually ascribed to one in authority is not accidental. Cliff's pretty much in charge around here.
Then we sing happy birthday to the accompaniment of his grandma's piano CD, a tradition of many, many years.
I think his favorite present will be the karaoke machine. All five of us will crowd around it admiring and exclaiming and doing a little singing.

He is truly king for a day.

He'll be in bed by 10, asleep by the time I get to the third page of Mercy Watson to the Rescue. The lights turned out, I'll kiss him on the top of his head and tiptoe out.

It seems the more things change, the more they stay the same. This boy, a child at heart, but a gentle man simultaneously, has single-handedly wrapped his love around each of us, making us better people and a more bonded family than we might have been. We would do anything for him.

Tonight when I step out of his room and close the door, I predict I'll look back, like I always do, at February 28, 1985 and remember it all, from start to finish. And I will look heavenward and smile.

(Mis)adventures in Dining (Parts one and two)

 "Animal crackers, and cocoa to drink,/That is the finest of suppers, I think;/When I’m grown up and can have what I please/I think I shall always insist upon these.”—“Animal Crackers,” Chimneysmoke, Christopher Marley

                                              Part One

“Conversation” with Cliff in the car the other day:

Me:  “Cliff, we’re going into this restaurant, but we’re not eating there. It’s not time for dinner yet. Okay?”

Cliff: “Yeah”.

Me: “We have to meet the man who is doing the music at your birthday party. It’s not time to eat. Do you understand?”

Cliff: “Yeah”.

Once in the restaurant, Cliff proceeds to take off his coat and get really happy. He is ready to be shown to his table.  Crap.

Me: “Cliff, remember what I said. We’re not eating here. We’ll do it some other time.”
Cliff: “No!” (Translation: What?! You did NOT say we couldn't eat here!)
Apparently, the only words he heard in my preparatory warnings were “restaurant”, “eating” and “dinner”.
Once we’re in the meeting room, the chair he chooses to sit on is ten feet away from mine. His facial expression is the exact opposite of the yellow smiley face guy. L  

After all, we are in a restaurant. In his mind, there is no purpose to being there except to sit down, order food and then eat it. I do understand how he feels. It’s like how I feel when I walk into Nordstrom. I ask you, would I walk out of there without buying that really cute jacket that makes me look awesome?

I think not.

We spend the next 20 minutes (during which the DJ forgot to show) glaring at each other.

The time period between in- the- car and in- the- restaurant (about 30 seconds) served as a frustrating, but familiar, segue from my warning (two) and an affirmation (two) of that warning, to complete denial of that warning.

 The next night, I did meet with a very apologetic DJ. Guess who I didn’t bring with me. (Three guesses, the last two don’t count.)

                                    (Mis)Adventures in Dining  (Part two)

Eating with Cliff is truly an experience not to be missed. There is always a story to tell afterwards.

First of all to look at him, your initial observation would be that he has Down syndrome, he’s on the short side, and he has a great smile. Besides that, most people would agree Cliff is also a young man who appears to be at least twenty-something. This is why it confounds my husband and me when we are asked the following questions upon entering a restaurant:

Ken: “A table for three, please.”

Hostess: “Sure. Would you like a children’s menu?” (I fake - look around and behind me and testily reply, “Well, since there aren’t any children with us that would be a no.”)

Well-meaning waitress #1: “Do you want me to bring a top for his Sprite?”

Well-meaning waitress #2:”Would you like me to put his drink in a children’s cup?”

Well-meaning waitress #3: “Hi there! Would you like some crayons and a coloring book?”

Same waitress: “Or we have some plain paper and colored pencils. How about those?”

Same waitress: “Ok, well, I can bring a pack of cards to play with while you’re waiting. Would you like me to bring them over?” (She is so sweetly eager to please, I keep my composure, smile, and tell her he’s not a fan of any of those activities.)

This penchant for restaurant staff to treat my grown son like a child is both infuriating and incomprehensible. If you work in a restaurant, I am hereby instructing you to say nothing but hello, how many, and are you ready to order. If someone wants their grown son or daughter to choose from a children’s menu or color, they will make that request.

Anyone who has eaten with him becomes aware quite quickly that Cliff is not a fan of forks or napkins either. Why bother with them when one’s fingers and shirts/pants work perfectly well for the purposes of eating and wiping? It seems the more we ask him to please use a fork, the more he puts down said fork when we’re not looking. Last weekend at lunch in Newport, I handed him a napkin and he promptly balled it up and threw it at Ken’s head. We probably shouldn’t have laughed, but it was hilarious at the time. At least it wasn’t a utensil.

But here is the true reward for bringing Cliff out to eat—it’s his sheer joy when it’s time for dessert. At the mere mention of lemon meringue pie, his joy is uncontained. When the pie then shows up, the reaction is not unlike telling someone they’ve just inherited a million dollars, a mansion and a yacht. What’s more, we have redeemed ourselves after annoying him with our insistence upon manners.

Just goes to show you, it’s Cliff’s world and we just live in it.

Gold

“Make new friends, but keep the old. One is silver and the other gold.” --Anonymous

I cried often when Cliff was a baby. I kept a stiff upper lip for my family, but in those moments when I sat alone in my apartment looking out a window or as I stood under the shower’s steady drumming, I cried because I felt sorry for myself. In the dark of the midnight hour, as I nursed him, I cried because I worried about how he would fare in this oftentimes cruel world. I cried because I felt more alone than I had ever felt, certain that I was the only mother of a baby with a diagnosis instead of just a baby.  

And then I met Leighann. We were both members of a support group that met once a week to talk about our babies, to just feel like normal parents. Leighann and I were total opposites—she outgoing and outspoken, and I, introverted and shy by comparison. The couples brought their babies, all of us gathering to admire each other’s children in the relative safety of a private meeting room at St. Agnes Hospital. Leighann and her husband began to socialize with us outside of the support group, and I always looked forward to our get-togethers because invariably Leighann would make me laugh like mad with her sometimes off-color comments and the way she artfully told a funny story. I could be with her without pretense.  I haven’t seen her for many years; I moved twice since then and we lost touch. When we found each other on Facebook, I couldn’t believe it. Now she makes me laugh without having to be in the same room.

Caroline writes to me once at year around the holidays.  Her Christmas card includes a letter with an entire year’s worth of stories about her family. I haven’t seen her in twenty-five years, but she writes as though we are the dearest of friends. I love how she ends her letters: “Fondly, Caroline”. In turn, I write to her in much the same way. The words she writes leave nothing out. The good, the bad and the ugly is all there, for there is no pretense between us either. I look forward to her letter, in fact, have come to depend on it, because there is a feeling of fellowship there; neither of us holds anything back. One of my favorite pictures in the world is the one of Cliff and her son Michael sitting on my ugly pink couch in my first apartment. A cone-shaped birthday hat sits on each brown-haired head. Neither one of them is exactly sitting up straight, owing to their low muscle tone, one effect of an extra copy of the number 21 chromosome. They wear matching one-year-old smiles and Caroline and I look so incredibly young, first-time parents who were related one to the other by happenstance.

When we moved from New York to Massachusetts fifteen years ago, my friend Diane and I did our best to keep in touch. We would take occasional trips to each other’s houses, but time and distance made it difficult to keep that up. I don’t know why we stopped calling each other. It’s terrible really, because Cliff and Diane’s daughter Jennifer were great friends. Conversations with her were always reminders that life is good and sometimes damn funny. Diane would eventually teach me so much about the ins and outs of dealing with school administrators who turned out to be giant assholes who probably shouldn’t have ever been put in charge of children, much less special needs children.  She would immerse herself in parents’rights and educational law, find the best people to assess Jennifer’s needs, and put it all together with her kick-ass personality! I credit her for helping to shape the parent I became and the advocate I continue to be for my son. Because of her friendship, I knew how to fight the constant fight for his rights. She informed my approach to life with Cliff: high expectations, no limitations.

How is it that I lost the treasured friendships of my 20’s and 30’s? How I wish I could turn back the clock, fix things. I miss them. After all this time, I have never quite formed the connections with other moms of children with DS that I had with them. I love the friends I have made here, and they are precious to me. But I believe there is a bond between and among those of us whose children are born with a challenge. I can pass a stranger on the street holding the hand of someone with DS and know her story. Our stories are the same. I know what it is like for them.

If there is a lesson to be learned from my experience, it is to give your friendships the attention they deserve. Even if it means a phone call while you’re doing a million other things. Even if it means getting in the car and driving three hours to where they live.

 If you take care of your friendships, you’ll always have someone to laugh with, a friend to listen to you cry, instead of sobbing in the lonely space of a shower stall.

Sturdy

                                                                           Sturdy

“If tomorrow morning the sky falls…/have clouds for breakfast. If night falls…/use stars for streetlights.”—If You’re Afraid of the Dark, Remember the Night Rainbow, Cooper Edens  1979

Descending from the top of the stairs, he pauses for a full two minutes, one shoeless foot stretched out straight in front of him, as if frozen in the middle of a kick-line dance.  “Come on down, Cliff. Breakfast is ready”. I watch from the landing as he gingerly puts his foot down, toe first, as though about to test the pool water.  Then, something happens that I haven’t seen him do before:  He turns himself around, Hokey Pokey style, in a complete circle before completing his descent. This seems vitally important to him, just like his habit of closing all the doors in the house and taking mail out of the mailbox one piece at a time.

News arrives via Cliff’s communication book about the scourge of the stomach virus traveling from one person to another at his dayhab program. It has me on edge. On Thursday, he isn’t quite himself. In the middle of the night, the familiar cough and roar coming from Cliff’s room has me running in to his room from a dead sleep, in time to grab a towel to catch the first of the night’s stomach contents. I am careful to not breathe, to spray the Lysol in the air between us and on every surface I believe he’s touched. I wash my hands at least a million times. But when I am that close to the front lines, it’s foolish to think there might be a different ending to the story and I resign myself to waiting for my own symptoms to start. Thirty six hours later, well…

One day when my boys were small, I took them to J.C. Penney’s portrait studio. There was someone ahead of us so we had to wait awhile. In the meantime, a dad with two children came in. When I glanced their way, it was hard to ignore the children staring at Cliff (We are used to this). After several minutes, one of the children asked me, “What’s wrong with him?” Dad pushed away the boy’s pointing finger, embarrassed, and admonished him. “That’s not polite!” I bent down to get closer to the boy’s face and gently said, “There’s nothing wrong with him. He looks a little different, that’s all.” To the dad I whisper, “Next time, it’s okay to answer his question. Otherwise he’ll learn to be afraid.”

To be completely honest, I’m not always nice when people stare. Sometimes I just stare right back. If I'm in a mood, it's a death ray. I will concede it's hard not to stare at a grown man laughing to himself in the grocery store aisles, or saying, "Halloo!" to no one in particular. Still...

These are some of the stories I thought about after I read an article about a woman who fought successfully for her child's right to ride a regular school bus and attend his neighborhood school. The school district was still in the dark ages, and opposed his inclusion. She adopted Churchill's motto--never, never, never give up--and she didn't. All these stories hold a common thread; they all are a part of the amalgam of events and realities of raising children with a difference.

There is a sturdiness to parents like us.  We do what all other parents do for and with their children; we just do it longer.  It’s like what some call “soldiering on”. We don’t even know we’re doing it until some well-meaning soul from the side of the street where the grass is supposedly greener, says how amazing we are. It’s funny, really, that someone might think I’m some amazing person when I am just me, Celia, who grew up in a modest town, in a modest home, with a modest intelligence and the kind of shy temperament that kept me on the outside looking in. I’ll tell you--you learn things when your kids turn out differently than you once daydreamed about. You learn that every day your child wakes up and is here, it’s time to bring that day up to the level he or she deserves; you’ve got to make the noise required to speak up when a child can’t; you must put your heart and soul into it. There isn’t another option. We owe our sturdiness to a steel will born on the same day our child was born or diagnosed or injured, the one that built up from that time on, instilled by God, whether you believe in Him or not.                                                                  

There’s no magic in it. It isn’t heroic. It’s simply putting one foot in front of the other.

 I like to think I do it with flair, a little like Cliff descending the stairs.