Sometimes when I do something nice for my husband or compliment what he’s wearing, he flashes that slow grin and says, “I love you too.” Cocky, I think - I didn’t say “I love you.” I do love him, even though he always does the dishes…but forgets to wipe the countertops. But my husband, who soaks up love with great satisfaction, is onto something. It’s both saying and doing that reveals love. And if autism is in your life, love can’t wait until Valentine’s Day.
With autism, there are so many things to do. “Normal” parenting tasks like washing a child’s hair or getting him into the car operate in their own autism space-time theory, warping into black holes of minutes or hours. Agony, patience, fear and even amusement are inevitable. “My God, is this really happening?” I asked myself when my then-young son wedged himself into a tiny crack between a McDonald’s Play Place wall and a tall attached shoe-shelf. Trapped to his chin, he yelled for help as his chest compressed. Five dads pulled him out - no fire department needed! None of those dads were my son’s. His dad didn’t go to Play Places.
Alone and autism aren’t a happy combo, but a common one. I parented mainly alone when married to my son’s father. When I became a single mother almost six years ago, the “alone” part intensified. Then almost two years later, I met the man I’d wed. When he invited himself to doctor’s appointments and school meetings and scanned labels for dairy products, I watched in wonder. I’d assumed a new man would be just a supportive bystander. Instead, he became an expert on autism…and me.
My emotional needs had gone dormant during the marriage, and as a single mom my strength was sapped just fending off the multiple legal actions of my attorney ex-spouse. I wasn’t used to someone observing me, grinding a child’s medications, making school lunches or preparing medical notes. In return, he only asked to be loved. Who could not love a man like this? (Handsome and smart didn’t hurt.) I never asked him to join our world the way he has, but he’s immersed in the triumphs (at thirteen, my son has a best friend, does his own laundry, has wickedly deployed a college-level vocabulary for years, and is an empathetic, funny, and remarkable son!) and the disappointments (he needs meds and special diet to maintain his focus). My husband is fine with making two batches of pancake batter - one using vegan butter - and bringing our own desserts everywhere. On top of this he runs his own companies. I fear we have affected his work performance, but again, this is what happens when you love in the universe of autism.
On our first Valentine’s Day, we’d been secretly engaged for four months but still grappled with our tangled divorces (his divorce and property division took five years, mine three). He’d planned a romantic trip to Palm Springs for us, but a pending court date had me as close to a nervous breakdown as I’d ever dreamed possible. So we stayed home and ate at a pancake restaurant. My fear and stress made me like an injured wild animal, unable to be touched or soothed. I couldn’t even sit on the same side of the table with him. The red carnation in a cheap cut-glass vase reminded me of blood. Still, he was always there - daily, quietly, giving me space and time. Our love survived that terrible period, and when I bowed to the legal threats (I didn’t have twenty-five thousand dollars to go to court), he was there to nourish me back to health. By the next Valentine’s Day, we were juggling our two houses and four kids, and hoping to wed. Yet another court date was approaching and I’d lose the money I lived on. We can’t remember what we did, but we were happy. On our third V-day, we were already married, with two kids at home and two out in the world. We were waiting out a lengthy home loan approval process, which depressed us both. Again, we can’t remember what we did, but we were happy.
This year, naturally, I have another court date coming, of key importance for my son and with the usual ridiculous legal bills. Our new home flooded before Christmas and is now a dusty construction zone. Yet we are still happy. How? True, we’re a great fit - intellectually, physically, and in other ways. That’s huge. But a partnership worth keeping must cultivate emotional maturity and sincerity. Parents of kids with autism know how to be alone. When we’re dropped by friends or unable to access schools, community activities and churches, we get very self-reliant. The same dynamic happens in many autism marriages when the duties, losses and sadness overwhelm and divide us. Single parents also have their hard moments, often without the solace of financial support that couples may at least have. How do any of us keep it together? The only way to succeed in relationships, as in life (married or single), is by being honest. It takes our best and bravest selves to keep talking, to listen to hard words we might deserve to hear, to spill out feelings we don’t even know we have until we say them. It takes doing tasks which say “I am here,” serving our needs. It means getting up and being the best person you can. It sometimes means not getting up at all one day so you can survive the next. It means rediscovering the love we had before autism or finding the love we seek in a new place.
It’s me, packing lunch for my husband and son in the mornings, which says “look, you’re as important to me as my son,” an unfathomable statement for an autism mom.
It’s him, hauling loads of laundry downstairs, doing it, and us folding it together.
It’s me, buying him the English biscuits he loves or a spy movie as a surprise. Or simply encouraging him, a former bike racer, to exercise.
It’s him, bringing me water in a blue antique glass every night in bed.
It’s us, having time without the kids.
It’s us, holding hands under the table at school meetings, or calling ourselves “the happiest people in the divorce courthouse” as we breeze in for another awful court date.
It’s him, getting tears in his eyes when he says, “I love you so damn much” and smiling.
It’s us, using pompous words we find funny.
It’s me, telling him I had never had this much closeness in a relationship and it makes me afraid I’m depending on it, because what would happen if I lost it?
It’s us, booking a hotel room just to get away for one night, because hours of happiness sustain days of obligations.
It’s us, letting go of little arguments and talking through bigger ones, because we know winning really means losing.
A few days ago, he was fantasizing about a very fast, impractical car and I told him, “I want you to have everything you want.” He said, “I love you too.” Cocky, yes, but right.
Everyone knows autism is strong. But we need to know we’re stronger. If your child is flying high at school without an aide or you’ve just found a good group home (and the two are not mutually exclusive over time), you have special strength. Autism has given and will keep giving you the ultimate test of endurance, patience and fortitude. You will pass the test over and over. Even when you fail, you pass. Whether you want to walk out the kitchen door and never come back, or you’re feeling perfectly peaceful and a bit smug, you’re strong. Because you’ve loved another human being with an intensity that most people never know. Devotion, patience, listening and not accepting the status quo - this is love. This is also how you handle autism. Remember that, and share your love with people who deserve it.
“How do we do it,” I asked him? Is it the card he writes me every Thursday? The way I dab sunscreen on his unwilling face before a sunny walk? How do we manage to stay happy despite our constant challenges?
“Every day is Valentine’s Day,” answered my husband. I love you too.
Christina Adams writes and speaks on autism and families. She lives in Laguna Beach, California, with her husband Tony, her son and stepdaughter. Her popular memoir “A Real Boy: A True Story of Autism, Early Intervention and Recovery” (Berkley Books/Penguin) is now available on Kindle. She hopes to make this Valentine’s Day one to remember