Dancing with Victor

Part Two of Special Needs Children grow into Special Needs Adults—The joys and challenges siblings take on after our parents are gone.

Nov 15, 2024

Dancing- Just for fun, I looked up the definition of dance. The Webster dictionary defines dance this way: To move one’s body rhythmically, usually to music. To move or seem to move up and down or about in a quick or lively manner. I laughed at seem to move up and down because that is how Victor dances. Up and down, bouncing and bobbing his head. And usually to music, because Victor does not need music to dance. Sometimes he walks into the kitchen when I’m cooking and starts bobbing up and down. I say, “Are you Dancing” and he says “Uh-Huh.”

In Part One of this series about caring for my special needs brother Victor, I told how my emotions swirl around in my head like those multi-pivot carnival rides that strap you into cages, then turn and twist around and upside down while the entire ride itself spins and spins. At times that is just how I feel. But not all the time.

Even though I have all these complex emotions, I know without a doubt that Victor is where he is suppose to be.

With me and Keith.

So now I have the privilege of sharing the fun parts that I have come to embrace in my new life with Victor

Dancing and Singing with My inner child

Victor and I watch Dancing with the Stars together. Sometimes, when there is a familiar song, or the beat gets strong, Victor will stand up and hold out his hand. This is his signal. His signal to me that he wants to dance. So, we have a little dance party.

Living with Victor feeds my inner child. Victor and I like to dance. My husband Keith does not. So now I have a dance partner. It really does not matter at all what we look like when we dance because we are just having fun. Victor enjoys dancing so much, anyone watching will be smiling.

Victor loves Disney movies, new ones, old ones, he loves them all. Once when my husband was out of town, Victor and I decided to watch The Aristocrats. It was very nostalgic to sit with him and remember seeing it when I was young. At the end, when they started singing “Everybody, Everybody, Everybody wants to be a Cat,” we both started singing and bobbing our heads together.

At that moment I realized, I now have someone to be silly with.

The first time Victor went to Disney World was with me, Keith and our two boys aged four and seven. Back then, you could stand in line at Mickey’s House and actually get to meet Mickey. My youngest was frightened of this big mouse. But Victor walked straight up to Mickey to shake his hand and said —“I’ve waited my whole life to meet you!”

Given his love of Disney, it is no surprise that Victor loves old movies and old TV shows. He is currently catching up on all seasons of Perry Mason. Or you may hear Victor announce from his room, “BARNABY JONES STARRING BUDDY EBSEN!” Another day you may hear him sing the theme song from Walker Texas Ranger:

“In the Eyes of a Ranger, The unsuspecting stranger had better know the truth of wrong from right. (Here he gets really loud)
CAUSE THE EYES OF A RANGER ARE UPON YOU.
ANY WRONG YOU DO, HE’S GONNA SEE.
WHEN YOU’RE IN TEXAS, LOOK BEHIND YOU……, ‘
CAUSE -THAT’S -WHERE -THE RANGERS ——GONNA BE.

And all the time he is singing loudly in his deep voice, Victor is simultaneously playing games on his IPAD.

When a song comes on the car radio that he likes, he sings and dances in his seat as I sing along. A favorite that really gets him going is (Victors version):

“CAR WASH—-Working at the CAR WASHER!” He may look at me and say, “I’ll take it from here,” and he blasts out “WORK AND WORK…..,WORK AND WORK!” Another favorite is “WE WILL WE WILL ROCK YOU!” (really loud!)

And when he doesn’t know the words to a song he mumbles or makes things up. Keith calls it Singing in Tongues. We should record our own version of carpool karaoke!

Sports on the Spectrum

My husband and my oldest son take Victor to New Orleans Pelicans basketball games. My son frequently volunteers to take Victor, so that we can have a date night. The Pelicans are now Victor’s top pro basketball team.

Last year, Victor won the Dance Cam Contest at the Pelicans game. The prize included a Pelicans T-Shirt, a $50 Visa Card, and some magnetic stickers. Victor was featured on the big screen in the center of the arena. For weeks, Victor taught everyone he met how to win a Dance Cam contest. “You stand up and you do this” (with animated bouncing) “Then you stick your tongue out like this” (tongue protrudes to side of mouth). “Then you wave your arms like this” (you get the picture), “and that’s all there is to it!”

Victors Dance Cam prize at Pelicans Game

Victor loves watching ESPN talk shows and, at times, you would think he was one of the guest hosts as he chimes in with his own comments. Stephen A is a favorite…, or Mad Dog. Victor can get just as loud as Stephen A or Mad Dog! I posted one of his meticulous stats pages in the first post. He really thinks he is a sports announcer.

Maybe we should start a Podcast—Sports on the Spectrum. My husband or my boys will ask him about a player but are never sure he isn’t just making things up. My son signed Victor up for Pigskin Pickem league and last year Victor stayed in the lead for most of the season.

Victor is also a huge LSU fan. We took Victor to the SEC baseball tournament this year and last. During one game, Victor caught a foul ball. Well, not actually. It landed next to the man seated by us and he handed Victor the ball. Then he chatted with Victor throughout the game. It made Victors day. For weeks, he told everyone that he caught a foul ball at the tournament. At the end of the game his new buddy said, “This was such a blessing to my day.” Victor has that effect on many people. He can be very entertaining with his sports analysis, his dancing, his singing and his made-up stories that don’t make any sense. Victor also loves to tell jokes. They usually don’t make sense either.

Dancing with Friends

Once a week, we attend a bingo game and coffee with special needs adults and their caretakers. This group has been a world of information for me. In part three, I will tell you how God guided us to this group. In the midst of all the hard stuff, we have seen God’s hand over and over again.

Our little bingo group occasionally has dances. Just as Victor loves to dance at home, he loves to dance with others. We just attended the Halloween dance and Victor and I dressed up as Woody and Jesse from Toy Story. More dance opportunities for me. More inner child.

However, Victor can be overly affectionate to the women he dances with. He will often take their hand and kiss it, “like a gentleman” he says. Then frequently he follows that with, “I like the ladies.” Most people are gracious about it. But at times it makes them uncomfortable.

In talking with other caretakers at the Bingo group, they expressed to me how this is common among special needs people. I had no idea. I did not live with Victor for much of our childhood because he was in a school and came home on the weekends. The other caretakers told me that even the girls talk about having babies and getting married. Several of them talk about their boyfriends and girlfriends.

My son got married last year. At the wedding reception Victor became very upset. We did not understand what was happening at first. But then Victor just started pointing at his ring finger and yelling—-“Do you see a ring on this finger. NO! THERE IS NO RING ON MY FINGER!” He eventually calmed down and found someone to dance with. But of course I had to explain to him to be careful not to be too affectionate. Just like little girls and some little boys talk about getting married one day, special needs adults want that as well.

Finding our People

After a great deal of research and with information from our little Bingo group, I was able to get Victor enrolled in a day program for special needs adults at STARC of Louisiana. Victor is thriving there. I had no idea about all the governmental programs available to Special needs adults. Neither my mom nor my sister ever saw the need. He goes everyday and they have given him a small job of sorting Mardi Gras beads. He is adored there mostly because he’s a big flirt. “I like ladies,” he says often, as if we didn’t know.

And through the program, we recently discovered that Victor has an incredible artistic ability.

STARC has art classes and the teachers have an amazing ability to bring out the creativity in their students. They have two art shows each year where the students art work is displayed with opportunity for people to buy. Victor told us the other day that he was going to be a famous Artist.

They also go out into the community for various activities—like eating in restaurants which Victor loves, going to movies and yoga classes and shopping at stores.

The social interaction he receives has helped with some of his mood swings. Our Wednesday Bingo group was critical to our discovering the STARC program. This program has been a HUGE GOD THING. How everything has come together cannot be explained any other way.

It was ALL GOD.

JOY AND LAMENT

Live with Victor has been a major change in our lifestyle. But at times circumstances and changes bust in that we have absolutely no control over. But through the difficulties and the challenges, God shows up again and again.

Many Christians I know, especially those in the prosperity gospel or charismatic traditions, will tell me that God can heal at any time. I do believe that. However, I believe even more in the power of God’s faithfulness to give us courage and strength to get through each day. And when we feel we do not have that courage or strength, then God provides help from other people. I am forever grateful for the Bingo group and STARC. They are that strength and courage that helps carry me through the hard times.

The people that are sent to me do not tell me. “Have more faith,” or “Pray more,” or “Listen to worship music.” They don’t say, “The enemy is just trying to tear you down.” Helpful concepts, but when you are in the depths of your feelings all you want is for someone to say——-“I hear you and I’m here for you.”

Gods glory comes more from working through your difficulties WITH GOD, not in miraculous healing. Could God heal Victor after 65 years? Yes, but I do not believe that is God’s intent. God desires to use Victor’s life— and our lives with him—to show the world that even those with disabilities bear the image of God. God loves those that are never completely healed just as much as those that are healed.

Sometimes we want to do every possible thing to change the circumstances of our life. We wish we were in another body, lived in another time, or had another mind! A cry can come out of our depths: do I have to be this person? I didn’t ask for it, and I don’t want it. But as we gradually come to befriend our own reality, to look with compassion at our own sorrows and joys and as we are able to discover the unique potential of our way of being in the world, we can move beyond our protest, put the cup of our life to our lips, and drink it, slowly, carefully, but fully.

Henri Nouwen1

His ways are higher than our ways and His thoughts are higher than our thoughts.(Isaiah 55:9). So in the difficult times, there are also good times, singing, dancing, fly balls, and surprising communities. Joy and lament go hand in hand. I could not have survived without God’s grace, God’s leading us to our new friends and Victor’s new community day care.

This is the elegant and complicated dance of our lives with God.

In part three, I will share just how God brought all of this together. It’s not how I would have expected.

But then,

Gods way never is.

( If you haven’t read part one, You can access part One here)

Hope for Caregivers. Henri J. M. Nouwen pg 33