My daughter in search of her voice

(With advice from wikiHow on “How to Interact With People Who Have Disabilities”)

Be respectful, above all else. Someone who has a disability should be afforded the same amount of respect as anyone else. View others as people, not impairments.

My daughter is short. She’s an adult but looks younger than her years. She speaks softly, especially in situations where she lacks confidence, situations that include walking up to a reception desk that comes nearly to her chest and talking through a window with someone she doesn’t know who is seated on the other side. And on that other side, many people sit at many computers among lots of files and equipment. For some, it is an intimidating window.

She is excited about why she is here. She is picking up an item she ordered weeks ago – something she selected and paid for herself. This is a friendly place, one where people have treated her well in the past. It’s not a busy, loud, big-box store with lots of people standing in line. It’s calm and quiet. We are the only ones approaching the desk, and so I don’t think twice – well, maybe twice but certainly not thrice – about encouraging her to go to the desk as I stand back in support.

She states why she is here, but maybe she isn’t loud enough, or maybe she doesn’t state with enough detail the task at hand. She gets nervous and hesitant to talk in public because so often people can’t hear or understand her. Yet she keeps trying. She makes a good effort this day, but the person behind the window doesn’t hear her.

Use a regular speaking voice and vocabulary and talk to her just like you would talk to someone without a disability.

I feel a familiar sinking in my being that comes from watching my daughter try to talk with someone and, once again, not being heard. Often my daughter looks to me for help. But not this time.

The person behind the window asks her to speak up. My daughter again states her business; she never appears bothered by having to repeat herself. The person behind the window rises to get closer. She raises her voice. She talks while my daughter is talking. Then she looks at me.

Speak directly to the person, not to an aide or translator. It’s frustrating for someone with a disability to have to deal with people never talking directly to her if she has an assistant or a translator present.

“Are you with her?” the receptionist asks me.

Whether I’m with her or not, where I’m standing should tell the receptionist all she needs to know. The question itself screams at me, accusing me of making the receptionist’s life difficult, of somehow inconveniencing her.

“Yes.”

That’s all I’m willing to offer directly to this woman. I look away from her and focus on my daughter with gentle prompts about what to say. I realize this is a way of speaking for her, and it hurts me. I realize also that I am sending a message to the receptionist: talk with my daughter, not with me.

Be patient and ask questions, if necessary. … Always let her speak and work at her own pace, without you egging her to talk, think, or move faster.

It’s not that I don’t want to help. I do, in fact, want to help. But my daughter doesn’t need my help. She is perfectly capable of communicating why she is there. She just needs the person on the other end of the conversation to slow down, listen and ask the right questions.

Once the receptionist understands my daughter’s mission, she asks her name. My daughter says her first name loudly. With my prompting, she also offers her last name. But the receptionist isn’t listening. For a moment, I think she is considering whether it’s worth the trouble to ask for the last name.

Again my daughter says her last name and this time communicates it successfully. We are told to sit in the waiting room until called.

As my daughter sits down next to me, I feel a sense of relief emanate from her. She offers something else:

“My ears were filled up,” she says, trying to explain away the difficulty she had at the desk. I can’t be sure of her meaning, but I equate it to the full-headed feeling I get when dealing with overwhelming stress. I’m sorry that she feels the need to say this.

Back at home I’m in a mood and get exasperated when I find that my husband plans to grill chicken and hamburgers for dinner. What is he thinking? But I settle down and sort my emotions. I tell him about the receptionist, that she made me feel like we were an inconvenience at least and a downright nuisance at the most.

I try, too, to put myself in the receptionist’s shoes. I wonder whether she was having a bad day herself, whether she was frustrated with something in her life that affected how she dealt with us. Similar to how I dealt with my husband?

And the world goes ‘round and I am left with this last bit of advice from the same article in the wise and surprising wikiHow:

A good habit to be in is to act kindly and considerately towards everyone; you can’t know someone’s situation by just looking at her.

 

A drop in the river

After nearly nine years, a diagnosis changes lives

While working at my home computer one late spring morning, I heard the muffled sound of water running. Any parent knows that when this sound doesn’t stop, a mess usually follows. The sound wasn’t stopping.

I had left my 9-year-old daughter in the family room listening to music. My boys – ages 15 and 13 – were in the basement with a friend. My bet was on the boys. So I hopped down the steps to check on them. They were glued to video games, nowhere near water of any kind.

Back up the steps I went and there noticed water splashed across the kitchen window. Had it started to rain? I leaned out the back door to check. No rain. Just my daughter on the patio with the garden hose.

Wait. What?

How had Anna slipped outside without my hearing the storm door slam? She was in her pajamas, pointing the hose toward the sky, flinging water back and forth with sheer joy on her face. The dog – fine protector that he was – was pretty happy too, sopping and loping around the yard. Spread on the concrete was a set of books.

“What are you doing?” I asked after springing down the deck steps toward her.

“I’m cleaning the house!” The words came happily from her beaming face.

Well, of course you are. And the books? Yep. She was cleaning those too.

I’m reminded here of those commercials for household cleaners. You know the ones: The children streak goo across immaculate kitchens and the moms just smile and get out their paper towels or spray cleaners or whatever the pitched product happens to be and clear the mess in no time. I’ve often wondered why the moms never scream, “This is the fifth time today I’ve had to clean up after you!”

That day I was a commercial mom. I stayed calm and smiled and actually found amusement in the whole episode. I didn’t have a handy product to promptly dry the dog and the books, not to mention the girl, who tends to have seizures when she gets chilled. But I did have a reason to be more accepting of the situation.

Just a little more than a week before, I sat in a neurologist’s office at Cincinnati Children’s Hospital Medical Center where Anna’s doctor reviewed test results with me. He explained that a spontaneous genetic mutation was the cause of the uncontrolled seizures she had suffered since she was 11 months old. The results pointed to Dravet syndrome, a life-threatening, rare and severe epilepsy that often resists medication and impairs cognition, physical abilities and behavior.

I was stunned.

While I had just received the news and couldn’t fully understand its implications, I did understand that after almost nine years of seizures and medicines and hospitalizations, after the ketogenic diet and the vagal nerve stimulator and brain surgery, after years of uncertainty and unpredictability and more questions than answers, we had a diagnosis. I don’t generally cry in front of medical professionals, but I found myself blinking away tears.

“I’m sorry. Is this sad news?” her neurologist asked me.

“No.” I said. “It’s just that … ” Words spun in my head.

“It’s just that it’s been so long,” he said. “And you didn’t do anything wrong.”

“Yes!”

It wasn’t a good diagnosis, to say the least. But I had known for a long time that Anna’s medical condition was, in fact, devastating. Now it had a name. That name was a drop of water in the river of our lives; it sent ripples out in all directions.

With that name came a sense of relief from at least some of the mystery. With that relief came a greater acceptance of my daughter’s challenges. And with that acceptance, came an even greater sense of love and appreciation for her spirit.

As bad as it was, the diagnosis helped settle my spirit. For years I had questioned and second-guessed myself. But I wasn’t crazy. The physical and cognitive impairments, the trouble with speech – these were real and not the result of something we did or didn’t do or necessarily from the constant changing of medicines and doses as we searched for seizure freedom.

The diagnosis helped me help my daughter. With the name Dravet syndrome came information that I had never had before, such as which medicines may help and which may hurt, which treatments are more likely to work, and which therapies are beneficial. The name connected us to other families dealing with the same diagnosis, other children who reminded me of my own. We met families from Northern Kentucky, Cincinnati, around the country, across the world. We were no longer alone.

Years have passed since Anna’s diagnosis. Thanks to the work of advocates and researchers, doctors now know more about Dravet syndrome. Children get diagnosed younger and find helpful treatments sooner, and I pray that is leading to better outcomes. But still children with Dravet syndrome suffer with disabilities, some die, and families live with anxiety and fear caused by unpredictable and uncontrolled seizures. Much work is left to do.

While questions and difficulties remain, I am thankful for a diagnosis. It has helped me to be more focused as our family faces its challenges. It has also helped me to be more understanding so that at times like that water-dappled spring morning I can find joy in a giggling, pajama-clad girl cleaning the house with a garden hose.

Photo courtesy of Pixabay