Light It Up Blue
I admit there are lots of things I know nothing about and probably never will. But there are three subjects that I can own. They have my name stamped all over them with a capital letter “S.” Let me explain. Just consider it a walk of about a mile in my shoes. Depending on the season, it would be flip-flops, leather slides, or knee-high boots with woolen socks. There have been times when I wanted to lace up Nike’s and run away for a while.
All three share something in common in that I didn’t choose them. They chose me. We just finished Lent and now celebrate the rebirth of spring and the Resurrection of Christ. We start out Lent with good intentions of giving up things that are sensually pleasing to stand in solidarity with those less fortunate. We take on more charitable acts of giving. While this is all well and good, often a cross is placed on our shoulder. I think of Simon from Cyrene culled from the crowd to hoist the cross of Christ up the hill of Golgotha. He didn’t want it. But then he carries through. The two carry the cross together. Simon sweats, as timber bores splinters into his collar bone, yet not near as bad as what Jesus endured. This is what I reckon when I feel the world has dealt me an unfair hand. We unite our sufferings with Christ and conversion takes place. We end up falling in love—through blood, sweat and tears. We appreciate our unique calling. If we are honest, we realize that we wouldn’t want to be anywhere else. No doubt, we need a break. Even a trip to the grocery store alone with our list and thoughts for an hour is like a long splendid weekend.
I grew up in Florida. South Florida is closest to the burner of the melting pot that is our country. As a child, I never understood autumn and all its color as we enjoyed two seasons, hot and warm. Our crayons drew in pictures of snowmen and ice skaters which were as unreal as a winter wonderland, such an experience which I was deprived. But we had the beach. We knew all types of people too—displaced New Yorkers—and renegades from all over. If it weren’t for air conditioning, the state wouldn’t have drawn so many from the North. People were lured to the Sunbelt to escape the reality of shoveling snow from driveways and mundane factory work. There is a certain quirkiness that Floridians are and share. I call it heat exhaustion. And talk about deep- south crackers—I knew them. They seemed to live so simple in the swamp, like they camped out for a living. We treed raccoons and rode through the Everglades on an airboat. We swam outside year round. We ran the AC on Christmas. We waved our arms in the fog of the mosquito control truck as it bombed through our neighborhood. We tore through the orange groves, barefoot and sticky. We fished in the canals for brim and threw them back to escape to the shade of the pinball arcade. We lived in gator country, and I grew proud of it.
Soggy, around the age of eighteen, I was ready to get out from under the humid blanket. I felt older than my years, burnt to a crisp with spring break. I moved to Virginia with my husband at age 22 and we only return for beach vacations, with our kids. I miss my brackish roots—below sea level saltiness. I will always call Ft. Lauderdale, Home.
I became a Christian in New Smyrna Beach, Florida at eighteen during a First Baptist Church of Pompano Beach college retreat. A real born again experience blew in and I woke up to its’ honeymoon breeze under the hum of a ceiling fan with twenty girls lying around like Barbie dolls in a bungalow by the shore. My life would never be the same. I knew there would be obstacles to jump over. Life wasn’t easy. I had already learned that. Becoming a Christian was my equipping.
So later when I met my husband and we married and both our cars broke down on the way up to Virginia, I didn’t flinch. Our love could weather it. It did. It does.
Our first son was born two years later and we gushed with love for his hazel eyes and blonde hair. We had him, but really, he had us. He was a mixture of placidity and colic. Colic isn’t the true condition but I use it because he had a stressful time as an infant. I know mothers can relate to the inconsolability of a constant crying child. What do I do?!!!
We loved him to pieces. We read books, we prayed. We rocked. I could explain it all but it will suffice to say that he broke us in as parents. He paved the way for the following five children.
When Paul was four we celebrated Santa Claus and Baby Jesus. Certain signs told us we might have a situation on our hands. Paul was excited with a new bicycle with training wheels, a pirate ship, and sword and shield for battles with pretend monsters. He interacted well with all of us, including his two year old brother, Scott. They munched on candy canes and wondered at the footprints left by Santa, sprinkled with baking soda to look like snow. We were happy.
The day after Christmas can be a bit of a let-down. Paul seemed to go into lock down. He didn’t speak a word for three days. It was as if his central nervous system had all it could take. I panicked. Rob consoled me. We started to notice inconsistencies in his behavior differing from other children his age. He sometimes stared vacant and repeated the last word of a sentence about four times. We refer to this as echolalia. He walked on his toes. He chirped and made springing noises. He became startled at strange sounds, like the heater in our new home. He was obstinate in his likes and dislikes. He didn’t like anything new or unfamiliar. He refused to wear a colorful winter parka I bought, wearing instead, three sweaters that were too small. The following August. I read Three Little Kittens. When he saw how much fun the kittens had with their mittens, he got the idea to try his coat on and walk outside in 95 degree heat. I was thrilled!
He was allergic and sensitive. His vocabulary shrunk and his speech became fragmented. He drew inward and seemed more content being alone. He regressed in potty training.
I knew he wasn’t ready for school and a few of my friends were on the homeschooling bandwagon, so I thought I’d jump on and try it with Paul. We struggled through pre-school worksheets I purchased from a Mennonite curriculum company. I would get him started on a row of colors or shapes and walk into the laundry room to breathe and give him space to think. Laundry at once overwhelmed me but gave me something to do that was clean and folded . I stared at a picture hung over the dryer of Mother Theresa holding a baby with one arm. I folded some towels and returned to the dinette set with Paul poised over the paper with a black crayon. He had such difficulty. I was sweating with fear, not wanting to acknowledge how hard this all was. Who could help us?
We have grown through the years as a family and there is so much to tell, but I hope the above has given you a snapshot of what it’s like to raise an autistic child.
The third huge development in my life that I reckoned with is that of becoming a Roman Catholic at age 33. Yes, that’s when Jesus was crucified. I see it as symbolic in my life too. Afterward is AD.
By this time, we had five children. Rob was putting his back into our living and I was at home having a nervous breakdown. No, not really, but almost. I cooked, cleaned, wiped noses, changed diapers, and on and on. One time Rob came home during a wintry rainy evening for dinner. I laced my running shoes and sprinted out the door. I pounded my feet on the pavement, hoofing all my stress in strides behind.
The Jesus I knew at eighteen was gone. I couldn’t find him. I was drowning in motherhood. Jim Gaffigan, my favorite comedian describes a large family well. At the time, his wife bore their fourth child. He said, “Imagine you’re drowning and someone hands you a baby.” That pretty much nails it.
In a rich narrative there are often stories within stories and I could expound on my Catholic experience with all kinds of elaboration, but I won’t. Let me just tie in up in a nice neat package for you, why I became Catholic. I needed more of Christ and I found his grace fully in the sacraments, namely Confession and the Eucharist.
It wasn’t easy and we had some explaining to do with our Protestant friends and family. It was also a culture shock with all the different expressions within Catholicism. When we moved to North Carolina, we faced a bit of persecution. People thought we followed a cult and that the pope was the anti-Christ. They thought we worshipped Mary and statues. They thought we didn’t know our Bible and that our Bible wasn’t authentic with its’ extra books. I felt like an outsider. I understood a little about what it might be like to suffer as a person in the minority. I questioned Southern hospitality.
It is in these three dimensions that I feel honored. No, no one forced me to become Catholic, but I had to do it. Growing up in Florida isn’t exactly a cross, but it is a unique heritage that I own. I am happy to boast: “You can take the girl out of Florida, but you can’t take the Florida out of the girl.”
Mostly, parenting a child with autism has taught me more about selflessness than anything else in my life. I appreciate that we all aren’t cookie cutter shapes. I love that our kids love each other and they aren’t spoiled. It doesn’t hurt them knowing that the most important question isn't “Why God,” but, “How can I help?”
We have endured the well-meaning advice from folks who have no idea what we’ve already tried. Dye-free, gluten free and dairy free diets, heavy metal detox, piano lessons, athletics, speech therapy, vision therapy, occupational therapy, etc. I had a woman actually comment, “That can be cured. You just need a specialist.”
People don’t know just how special this life is. They don’t realize that these kids are here for us, not the other way around. Now that my son is 23 and still struggles through social situations with courage and gumption, I can say that I am glad that God trusts me. I would gladly take Paul’s place, if I could. I am reminded sometimes when life gets tedious that I have promised God that I will go through anything to see my son happy. That is all I want. I don’t care about anything else. Even beyond that, I care most about his standing with eternity. I think Paul has that wrapped up.
I think that the slogan, “Light It Up Blue,” for Autism awareness is only fitting. Blue is the color of heaven. We look upward to the sky.
One day, we’ll get there.