Caring for Our Children with Autism and Our Parents Dementia: How Do We Cope?

Last week, on a gloomy Thursday afternoon, I sat in the prayer room on our retreat center’s property with a student from Miami University. It was the first meeting of a spiritual mentoring relationship. I lit a candle and made her a cup of tea.

Frankly, I wondered if I had anything to give that day.

The day before I’d visited my mom who is careening headlong into full-blown dementia. I’d walked into her room on the memory unit to find her sobbing on the couch, and two hours later she was curled up on the same couch in a fetal position, exhausted after our short outing. Tears streaming down my face, I called the nurse in to take her vital signs.

Just the Sunday before, Joel, our 32-year-old son with autism, continued in his manic cycle—waking up at 3 am and never going back to sleep—unable to keep one single thought inside of his head. Let’s put it this way. He had many, many thoughts! His constant chattering made it impossible to sit through church—not even the worship portion which he usually loves. For the third week in a row we’d left church early for the hour’s drive to visit Grandma. We found her on her couch, crying her heart out. Joel stood staring at her, then looked at me and said, “Grandma’s sad.” My heart, already heavy, broke.

Neither of these situations—adult son with mania and autism, or aging mother with worsening dementia—are curable. Lately, I’ve found myself dissolving in tears and battling exhaustion more often than I’d like to admit.

So, here I sat, on a gloomy Thursday afternoon, with a bright-and-shiny twenty-something—the entire world ahead of her—who literally lit up the space with her beauty and vitality.


What did I have left to give?

As my new mentee poured out her heart about family matters and difficult daily choices at Miami, Psalm 42 keep niggling at my mind. I pulled out my bible—The Message translation—and asked her if she’d like to spend some time in Lectio Divina. She was willing.

I opened the book and read the first four verses of the psalm slowly, asking her to listen for one word or phrase that shimmered with energy; that drew her attention.

A white-tailed deer drinks from the creek; I want to drink God, deep draughts of God. I’m thirsty for God-alive. I wonder, “Will I ever make it—arrive and drink in God’s presence?” I’m on a diet of tears—tears for breakfast, tears for supper. All day long people knock at my door, pestering, “Where is this God of yours?” These are the things I go over and over, emptying out the pockets of my life.

As we sat in the quiet, the phrase emptying out the pockets of my life resonated in my heart. I remembered how, the day before in my mother’s room, I had reached in my pocket for a tissue to dry my tears and found a gooey mess. Somehow, a small vial of Neosporin ointment had lost its cap, and ointment had squeezed out into the depths of the pocket. Yuck! I pulled out a used tissue that shared the pocket, and dabbed at the ointment, trying to clean up the muck.

Suddenly, the words of a Julie Meyer song, “Healing Oil,” played through my mind.

Let your oil flow down/let your oil flow down/just as a river flows into the sea/oil flow into me/Washing away shame and bitter memories/and in one moment I am set free/so when winter lingers and I need to feel the spring/would you awaken the song within me…

My beautiful mentee pulled me back into the reality of the moment, and as she shared what God had whispered to her in the quiet regarding her life situation, I realized this song would speak to her as well. I played it, and as we listened I knew this was what I needed more than anything else in these days of autism, mania, and dementia. This was what my mentee needed more than anything else to negotiate difficult situations in college and family.

We simply needed to sit in the Lord’s presence and let his healing oil flow over us.

I had stuffed God into my pocket, just as I’d stuffed that tube of Neosporin, too busy to spend the time with Him; too busy to put the Neosporin away where it belonged. Oil that was meant to flow freely had congealed and gotten messed up with tissues I’d used to wipe away my too-frequent tears.

It’s time to empty out those pockets. It’s time to draw some boundaries around my time with the Lord. It’s time to set aside a few moments each day to simply sit with the Lord and soak up the healing oil of His presence.

Do I have anything to give to these students I meet with on a regular basis? The Lord says, Yes! The Lord awakens the song within me, and that song overflows to touch all those I meet with.

Reflection Question: What have you stuffed, metaphorically, into your pockets (or, maybe literally!)? What do you need to pull out and throw away? How can a few minutes in the Lord’s presence each day help you on this often challenging and exhausting journey as a special needs mom or dad? I urge you to take four minutes to listen to Julie Meyer's song, Healing Oil, as you meditate on these questions.