March 26, 2012

Another Layer Revealed

Our paradigm shift happened five years ago. Our beautiful little Ella was very slow to speak, not uttering more than "ma" at nearly three years old. She seemed slow to pick up on things, and we often wondered whether it was just her adjusting to life in a family. Things culminated one fall when she started 'blinking' and losing a second or two of time. She was diagnosed with epilepsy on the same day that a psychologist told us she had a low IQ and ADD. We, psychologist included, ignored his findings with our new knowledge of her brain activity. Who could possibly take any test while having seizures every few minutes?

That bout of visits with neurologists and psychologists gave us a little glimmer of her uncertain future. We first heard the words 'mental retardation' there, in relation to our daughter. Gone were visions of her in college, leaving our home to start one of her own. We joked about it at first. Around here, laughter seems to be the way we deal with things. I would say, "She's going to be with us forever, in our basement with 17 cats. She will love every minute of it."

Neither of us really, truly thought we were being serious.

I prayed for years that the Lord would "restore the years the locust had eaten" for Ella. As He began to reveal more of her to us; my prayers began to be "let us love her the way she is." He answered those prayers abundantly.

In the fall Ella got 'lost' at church. It's a small church, with only three hallways. She left her class and thought church was over so she waited in the foyer for me. She sat there and watched as the foyer full of people slowly emptied. She sat there thinking she had been left behind, all the while hearing the choir sing from the sanctuary. I finally found her, I guess she had just asked a stranger visiting our church where she could find her mommy. That scared me to death. It also made us think about her future in more realistic ways.

After speaking with our wonderful neurologist, we found ourselves in the lobby of a pediatric psychologist. I had spent the week filling out paperwork as both parent and teacher. I dug through our disorganized file cabinet and found IQ tests and neurologist reports for the last five years. We were both nervous about the next hour. I feared that they would scoff and tell us to send her to a public school where she could get services that she needed. I had a lot of fears that afternoon. Seth was my support, but from the beginning said that I would need to be the one talking. The two psychologists were young and friendly. I suppose their days are filled with anxious parents hoping that they have all of the answers. We were just two more worried faces.

Our interview went on for over an hour. I soon got to understand these ladies pretty well. The senior psychologist had the 'encouraging' habit of finishing our sentences. She had somehow picked up the amazing mind reading skill. We were peppered with questions starting at the beginning of Ella's adoption and running through the past seven years.

After being 'on' for so long I started to fade. My exhaustion hit me when one doctor asked how Ella was with puzzles and I just stared at her. Glancing from one corner of the room to another I nearly panicked. A little help from the psychic would have been appreciated but she, too, just stared at me with a smile on her face. My mind was a mess of frantic thoughts..."How is she with puzzles, sheesh. I'm a horrible mom! I can't think remember puzzles, do we do puzzles? Does she like puzzles? When did she do a puzzle last? Like 3 years ago? That's a terrible answer, I can't say that!"

I think I finally murmured, "She doesn't like puzzles too much." We quickly moved on and shortly after the appointment ended. They probably smelled my brain frying.

Seth went alone with Ella for the two sessions of three hour testing. Ella thought it was a fun treat to have snacks and play computer games with these doctors. She also fell asleep in the car on the way home and had double vision the rest of the day. Seth said that the last day the doctors escorted Ella out to the lobby and had a look of pity on their faces. He couldn't tell if it was a "pity you think this perfectly normal kid has delays" look or a "pity you will be met by the child protective services at the elevator" look or maybe even a "pity you have no idea what you are dealing with" look.

I went to the final meeting alone. Seth called in and joined us via speaker phone. All five kiddos were drawing pictures and doing mazes about the Myecean Greeks while he listened to our meeting from a quiet bedroom. Pacing back and forth, I'm sure.

The ladies looked at each other and one flushed bright red before she even began. They slid a stapled stack of papers toward me that had Ella's identifying information along the top. I felt myself begin to sweat and wondered why I had so many layers on. The senior psychologist began with, "This is the bell curve of normal IQs. Here at the bottom is 90 and the top is 110. Ella's right about here." She slid her pen nearly off the paper to the far left. Too far below what we expected, much farther than the previous test. Way down to 65.

I let a wheeze escape.

"Ummm, so what does that mean?" With the psychic doctor's help, we asked a few questions attempting to understand what this looks like as a child and an adult. They were very encouraging and supportive of Ella being homeschooled. They said she was thriving and gave me pages of resources to help in her educational journey.

Over the next hour I felt myself curling up into a ball. As much as I could without totally freaking these two ladies out. At one point I looked down and realized I had both arms wrapped completely around my torso and my legs crossed twice. I was turning into a pretzel.

She probably will never leave us. She will never drive a car or live on her own. She will need our help for the rest of our lives. We have already talked about how to plan so she will be taken care of when we are gone. She indeed may live in the basement with 17 cats. She probably will love it.

Sometimes.

She talks about being a mommy one day. She wants to get married. She wants to be a vet or a plumber or a dog when she grows up. She's beautiful and easily confused. Her best friends are four and five year old kids. She can read, but doesn't understand what she's reading. She can multiply, but doesn't understand why she's doing it. She wants to play with the girls her age, but she can't understand what they are doing and resorts to being goofy to make them laugh.

These test results should not have been a surprise to either of us. We've watched our daughter fall farther behind her peers. I've held her back in school and dropped curricula mid-year because I was losing her. I've tailored programs and done funky multi-sensory things trying to help her learn. Her little brother and sister have long since passed her in school, not that she knows it. But we did, and we should have expected her tests to be low.

That day I thanked the doctors and left their office. When I sat in the car I exhaled for about 5 minutes. My pretzel limbs loosened and I felt okay. I felt okay because nothing has changed in Ella. She's still the same Ella that she always has been. Our lovable, funny, God given, Ella.

4 comments:

Melissa Juvinall said...

Thinking about you guys tonight and praying for all of you. Hugs to Ella and you, Apryl.

Becky said...

Love, love, love that sweet girl!! She is amazing - determined, sensitive, funny. Sally may have passed her in some ways but Ella can crochet with the best of us. God blessed us when He worked in amazing ways to give her to us. Just remember how it all fell into place for her to come to us. We are here for you.
love,
Mom

Rob and Candy said...

without words but filled with tears. hugs to you.
candy

Anonymous said...

Apryl, my heart breaks with you. Yet, even as my heart has continually broken when presented with my daughter's "limitations," my greatest joy is witnessing her joy, hearing her muffled "umumum mommm" (I love you, mom)and feeling her arms wrap around my neck. Where would these kids be without our love and where would we be without theirs? Tia Parks