Difficult choices in daily life when parenting an adult child with disabilities

Most parents don’t cry when their 18-year-old goes to the Department of Motor Vehicles for their first photo ID. Well, some might, I suppose — especially if that 18-year-old is now a driver on their car insurance. Insurance premiums and a parent’s blood pressure are sure to rise.

My daughter was not applying for a driver’s license, but rather for a “non-driver photo ID” – a phrase Johanna had memorized by the time we got to the final desk at the DMV. Few people can understand what goes into getting ready to get out the door, let alone what it takes to help my daughter process the information.

The morning of our outing to the DMV, I helped my daughter shower and dress and gave her seizure medications. We chatted while she slowly sipped her coffee and waited for her first home care appointment with an occupational therapist. Jo’s morning coffee is an important routine of her day.

After her occupational therapist left, I started the first of three IV infusions that would be timed throughout the day. Our pediatrician approved us to restart the IVs to help with headaches. I am grateful that my daughter has a medi-port and that I’m trained to administer IV Tylenol, added fluids and antibiotics when prescribed.

But sometimes I grieve when I consider that most kids Johanna’s age are worried about SAT scores and college applications while she sits with IVs watching the Disney channel or having a children’s book read to her.

I know that life is different for my daughter and for me. Most people don’t notice the difference because I make it look easy. It’s not a fake appearance; it’s just a way of life — choosing to be grateful for what we have rather than bemoaning what’s been lost. For me that’s an easier way to live.

By the time we walked through the doors of DMV, it was mid-afternoon. Still, I decided it was more important to take each step very slowly so that Johanna could practice skills in the process.

I navigated the fine line between advocating for my daughter’s needs and stepping back so that she could do it on her own. These experiences are teachable moments for the public as well.

Some of people size up the situation and direct all the questions to me and others ignore me and fire questions at Johanna that she can’t process quickly, because of her disabilities. To me, it is an interpretive dance of knowing when to bow and when to take the lead. I’m learning new steps every day.

I asked Johanna to answer the question I read to her, as I filled out the forms. I also had her read her social security number to me, as I traced the numbers with my finger moving left to right.

Then it was time to sign the ID and take the photo. Johanna took great pains to fit her large signature into the little pink box that would be a permanent part of her ID. The clerk panicked a little as we got closer to the lines. I softly held up my hand and reassured the clerk as I put my finger on the line to help Johanna fit in.

Fitting into the little boxes, in forms and in life, is never easy for a person with disabilities. But sometimes you have to find a way to fit in to get what you need. I’m happy to help.

The photo part was easy. Jo has a winning smile that is more identifiable than her signature. It defines her better than any of the labels. Her smile is contagious and it warms my heart.

Then we read aloud the ticket number that would indicate when it was our turn. We listened to the announcements and watched the numbers appear on the board. As I helped her scan the walls to identify the desks which would possibly assist us, I realized how complicated these tasks are to a person with disabilities.

When they finally called our number, Johanna looked down at the ticket in her hand and excitedly pointed to the appropriate desk, as she began to move out of the seat. I hesitated to stop her, knowing that it might interrupt the process in her brain. But I had to stop her because she left her purse sitting on the bench.

If I picked it up for her, then she would always assume that I would pick it up. I learned this lesson with my able bodied husband and I was not going to repeat this mistake with my daughter. Some day her safety may depend on it. She grabbed her pretty yellow purse and raced to the window with her papers in her hands.

When we reached the window, that’s when my eyes filled up with tears as Johanna proudly announced, “Hi. I am here to get my non-driver’s license photo ID.”

In that moment, I realized that maybe I had put off this form of ID because I was secretly hoping she’d outgrow these cognitive and medical issues and be able get a driver’s license like my other three kids. But as quick as that thought passed, my next thought was deep admiration for the special person that proudly stood in front of me, slowly signing her name again on the appropriate line.

My tear-filled eyes glanced quickly up at the clerk’s eyes and I noticed she winked at me and smiled. She seemed to recognize some of the subtle and not-so-subtle signs of my daughter’s special needs. I’m certain the clerk noticed the love and respect written on my face and beaming from Johanna’s smile.

We ended those teachable hours with a lesson on using the debit card to pay for the ID card. It took three attempts. But it was worth the wait.

All day long, I had to make a choice to teach or take over. It would have taken me half the time if I just filled out all the forms by myself and waited for our turn, letting Johanna zone out in her own world. But then we’d be missing the point, not to mention Jo’s smile. These are great experiences to practice key life skills.

This is my daughter’s life and it’s my job, and greatest honor, to help her live as independently as she can. No matter whether a day begins simply with feeding and dressing her or whether it includes running IVs, visiting doctors and running longer errands.

It’s all worth it, because Johanna is a gift and her life is worth it.

Over the years, I’ve met and read about parents who have chosen to abort their children because of medical issues and disabilities. Looking at our complicated life, some wonder, if I knew, would I have made the same choice?

For me there is just one choice: life.

Life is never easy, but it is life — a precious gift to be treasured. And no matter how hard life is, in the end- it’s the right choice.

Eileen Benthal is a writer, speaker and wellness coach with a B.A. in Theology from Franciscan University. She is the author of Breathing Underwater: A Caregiver’s Journey of Hope.

Eileen and her husband Steve live in Jamesport and have four young adult children. Their youngest, Johanna, is a teenager with special needs.

Eileen can be reached at FreeIndeedFreelance.com.