A Rough Patch for Madison—and Mom

A Rough Patch for Madison––and Mom 

“So how is Madison?” a friend asked at a recent family gathering.

I’d updated her on my son’s spring break escapades and the latest on my eldest daughter’s new job. But the news on Madison was far less positive. I shifted in my wheelchair and took in a slow deep breath.

“Well,” I paused and swallowed hard, “she’s having a rough patch.”

“Oh, I’m so sorry to hear that,” the friend replied.

“Thank you. We’re going through some medication changes. She’s developed some aggressive behaviors.” I paused and flashed a quick smile back at the kind woman, someone I don’t see very often, but enjoy when I do. She knew Madison was my adult child with autism and was in a residential placement. “The staff there is fabulous, though, and they are managing it well. I’m sure she’ll be better soon.”

“That’s great. I’m sure this is hard for you.”

“Yes, but I’m grateful for those who care for her. They really love her.”

The conversation took another turn, but my insides were still churning. Flashes of the last six weeks kept distracting me.

I remember answering the phone on the first ring that Friday. “Everything is fine now,” Madison’s nurse had said.

But I already knew it wasn’t.  A 4 p.m. phone call on a Friday afternoon from your child’s nurse is never a good thing. I waited for the “but.”

“She’s ok but I wanted you to know that she has fractured her cheekbone. We noticed some unusual swelling and wanted to have her examined. We are in the ER.”

“Oh no! Did she fall?”

“No, no fall. She’s been targeting that cheek with self-injurious behavior.”

“She’s hitting herself?”

“Yes,” she said, her voice tender with compassion. “I’m so sorry.” She paused to give me a moment and then continued. “Here’s where we are.” And for the next ten minutes she answered my questions and listened to my comments as she filled me in on the medical assessments, treatment options, and plans. “She’ll have a full exam here. We will keep you posted.”

And she did, as did others involved in Madison’s care. Phone calls. Emails. Team meetings. Conference calls with doctors, nurses, behavioral specialists and caregivers.

And then Madison had another episode at the residence. A 911 call brought an ambulance and the police because of her aggressive behavior. Again she calmed down and another round of medical problem solving began.

New meds. New tracking. New routines that for the moment don’t include me.

The last time I visited her she tried to go home with me, pushing my 385-pound power wheelchair so hard and with such force that she almost tipped me over. Four staff members had to disentangle us before I could scoot out to the car with my friend. Once safely inside my van, we both cried.

Where is my Madison? Where did my daughter go?

She’s still in there. I know she is. But either the meds or the hormones or autism itself has snatched her from me.

And I miss her.

I miss our Tuesday lunches. Our scripted conversations on FaceTime. Our trips to camp. Her visits home.

I miss her bright eyes sparkling back into mine. Her sneaky smile triggered by a random happy thought. Her Barney-voice belly laugh.

Yes, we’re in a rough patch, a deep one.  But thankfully we’re not alone.

After a recent Pathfinders for Autism board meeting, I mentioned my struggles to some fellow parents and staff. Their experiences, so disarmingly similar to mine, both shocked and comforted me. But beyond their stories, their grit inspired me.

Autism is difficult; autism alone is unthinkable.

How well I remember that feeling fifteen years ago when a group of us decided it was time to travel this journey of uncertainty together and founded Pathfinders for Autism. We committed to “find a path for our children” and to share what we’re learning along the way.

Rough patches are a way of life, I reminded myself.

At least we don’t have to travel through them alone.

Becky is a current officer and a founding board member of Pathfinders for Autism. To donate to Madison’s Banner for the annual PFA golf event click here.

Comments

  1. There are some beautiful thoughts for all caregivers in our post today. Most importantly the value of having help and support. I can tell you do an amazing job managing the rough patches with strength and love. Thanks for sharing this.

    • Rebecca Faye Smith Galli says:

      Thank you, Meg! It is quite a journey but so much easier with friends, family, and good support. Thanks for the encouraging words.

  2. Caregiving is the hardest job there is. And when you are missing the one you care for, in that they are in a different place than you had been with them, it is ever so much more poignantly painful. Thanks for your honesty and for telling all that you are not alone……..we so often think that.

    • Rebecca Faye Smith Galli says:

      Hi Cathy! Thank you so much for your comment of encouragement. The isolation can be the hardest part of all, putting us on the edge of despair. It helps knowing there are others who are beside you traveling a similar path–who can both help shoulder the pain and think through new options.

  3. Rebecca, your writing (and the subject matter,) reminded me of my own writing and blog. I like your voice. Wow. This is tough. I appreciate your tough spirit, new cyber friend. See you in the midlife group. x

    • Rebecca Faye Smith Galli says:

      Hi Leisa! Thank you for your note and kind words! I’m honored. Yes, it is so tough, a daily challenge. Thanks for your support and encouragement. I truly cherish the midlife group and look forward to connecting in person one day.

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