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If she was autistic…where did that leave me?

7 Jun

When Oli was two years old, a few drastic changes took place in her life. We moved 1500 miles away. We moved away from one of her grandmas, her aunties, her cousins, and the only house she ever knew. We moved away from her sister.

At the time that we moved, Oli was still taking. On the drive down she repeated the words “up” and “out” over and over and over. It was a looooong drive. I remember that we stopped for breakfast one morning on the second day. My mom asked her what she wanted for breakfast. Oli answered “eggs” and then clapped enthusiastically. My girl loves eggs. She also said “Mom. Dad. Grandma. Koa. Milk. Juice. Eat. Hi. Bye.” Those are just a few.

Six months after we got to Texas, I had another baby. By this point her speech had already started to decline. Ginger was born in March 2010 and by September, Oli had completely stopped speaking.

She did NOT do well when Ginger was born. None of us did. Ginger cried all the time, day and night for 4 months straight. I couldn’t put her down. Ever. She was either eating or crying. She rarely slept. Oli was stressed out and hated the baby. If she heard Ginger near her she would scrunch up her face and push her away. If I tried to get her to hold the baby she would cry. She didn’t understand what she was or why she was so loud.

Oli started stimming more and more. She stopped repeating simple words and didn’t use the words that had been frequent in her vocabulary six months prior.

By Christmas of that year I knew that something had happened. Something else was wrong that had caused her to stop talking. Was it the stress of the move and the birth of her sister? Or was it something else?

I knew that I couldn’t just take her to a regular doctor to evaluate her. Blindness complicated the diagnosis and I didn’t want them to misdiagnose her or misinterpret her behaviors (blindisms) as autistic behaviors because in blind kids they are not.
Most kids born blind have a lot of the same self-stimulatory behaviors that autistic kids have. They have a lot of the same sensory issues too.

Oli constantly shakes her head back and forth. Continually. All day long. (Think Stevie Wonder.) She has done this since she was a year old. She started flapping her hands around 2 years old. She loves to spin and swing and she’ll rock violently back and forth when she’s mad. She’s always seeking more and more input because she is missing the main way that human beings get their information. Through our sight. She puts everything in her mouth. Blind children typically go through a longer oral stage because of the reason I stated above. This is just one more way to get information if you can’t see it.

None of those things set off any alarm bells though. I knew that was just her blindness.

What DID set my heart racing and began to fill it with unspeakable dread and fear? What one thing lead me to question what was wrong with her?

Why did she stop speaking?

It felt like one day she was talking and the next day she just wasn’t.

What would cause this to happen?

One terrifying word came into my mind.

Autism.

I called the research center for anophthalmic and microphthalmic children. The Albert Einstein Medical Center in Philadelphia. I made her an appointment for an evaluation. They had developed a specific clinic staffed with experts on blindness to determine if our kiddos really were autistic or if their behaviors and characteristics were simply the results of being born blind. Many of our kids were receiving the diagnosis of autism when they weren’t and many of them were not being given the label when they were. That team was supposed to be able to clarify and correct the appropriate clinical diagnosis.

So I flew her to Pennsylvania and asked them the million dollar question.

Was my baby girl autistic?

During the months leading up to that evaluation I began to question, pray, bargain, and plead with a God that I had started to lose faith in. I began to cry and scream at him “You made her blind! You made her physically and developmentally delayed! Don’t make her autistic too! Please! I will do anything! ANYTHNG! Don’t make my baby autistic too!”

I laid in bed at night questioning my very life and existence. I began asking questions that I would never receive answers to.

I wondered why He would do this to her? Why would He do this to me?
Why had my life been so easy before? Why had it become so hard?
When was my nightmare going to be over? When was I going to wake up?
The more I prayed and pleaded…the farther away I drifted.
The more questions I asked…the less answers I received.

I flew Oli to Philadelphia with a heavy heart, a stomach full of knots, and an empty soul.

Where was my God? Would He answer my prayers?

I feared that I already knew the answer to those questions.

Where did that leave me now?

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One Mother’s Expectations

14 Mar

“I thought that one day I would just wake up and have all of the answers. What I have found is that the answers I get, rarely have anything to do with the questions I ask.”

It was a warm day in June 2009 and I was sitting on our cream colored leather couch in the living room. I’m sure there was a cartoon on the TV that I had forgotten to turn off when my kids laid down for a nap. I was alone, which for some reason, I usually am when I get bad news. My husband was at work.

The phone rang and I glanced down at the caller ID.

Unknown.

I normally don’t answer calls labeled unknown and let them go to voicemail, but on that particular afternoon I answered it.

Unknown.

That is where I was sitting in the moments before I took that call. I didn’t know what Oli “had”. I didn’t know why. I didn’t have any answers. Why had her eyes not developed in utero? What was wrong with her? Why was she so different from other children her age? Why was she 2 years old and not walking or talking yet?

At that point in her life, I needed to know why.

I thought that if I knew why, I could help her better. I thought that if I knew why, then I wouldn’t be so angry with the world. If I finally got an explanation as to what had happened, then I could come to terms with the whole mess that had become my emotional prison.

I found out why, on a warm day in June when my phone rang and I answered a call from the Albert Einstein Medical Center. They were calling to tell me the results of Oli’s genetic testing.

I found out why it happened, but I did not find out why it happened to her. Which is really what I wanted to know all along.

Why did it happen to my family? Why us? Why did fate choose my sweet, innocent, beautiful little girl to bestow such a big obstacle on. A big difference. A hardship.

Why?

You see, for a long time I thought that this was some kind of punishment. I couldn’t understand why this happened to me. To my baby. I was a good person. I never hurt anyone intentionally. I had a good life. A happy life. I grew up with a great family. I had friends, went to college, had a job. I was grateful for my life and was just going along trying to be the best person that I could be.

And then…the ground fell out from beneath my feet.

I thought it was all happening to me and my family. It was my son and my husband who were affected by this.


I
took on ALL of the responsibility of the health and happiness of my little family because I was the wife. I was the mother. I was supposed to protect them, keep them safe and ensure their happiness.

And then Oli was born.

She was born and I wasn’t sure that I could do any of it anymore.

If I could not stop, prevent, change, or fix what had happened to this little person that I had brought into the world, then I could not stop, prevent, change, or fix what happened to any of them. That realization hit me like a 2 ton steel truck, right smack dab in the middle of my forehead.

When I realized that…I began to react and operate by my fear.

Fear of this big, scary world that had walked into my hospital room on another warm day in May, 2 years previously. That unknown world walked right in, handed me a big pile of crap called unmet expectations and promptly walked right back out of that room.

Oli wasn’t what I had expected. She didn’t fit into my box. The box that was supposed to hold my perfect little life. No matter how hard I tried to cram that square peg into that round hole, she would. not. fit.

When I answered that unknown phone call, I still had expectations. I expected to hear that she had SOX2. Something that lots of other kids had. This particular gene deletion is responsible for the majority of microphthalmia and anophthalmia.

You know what I heard instead?

I heard that she did NOT have SOX2. I heard that she had something else. Something that was not very well known or very common.

She had OTX2.

A gene called OTX2 was deleted from her 14th chromosome and caused her eyes not to develop.

They didn’t know a whole lot about OTX2. When they diagnosed Oli she was one of only 15 kids in the world known to have this deletion.

I expected to finally have an answer, a plan. I expected to find out her diagnosis and then hear, “She will do this at this time. Talk at this age. Walk at this age. Have this ailment, but never suffer from this one. She will go to college. She will get married. She will wear a pink dress to the prom.”

These are the things I wanted to hear when I got that phone call. I thought that I would finally have answers. Real answers. A plan. When I got the diagnosis, I expected a map for the rest of her life to be laid out during that phone call.

What I got instead was….we don’t know?

We don’t know what her future will look like. We don’t know when she will walk or talk. Or if she will at all. We don’t know if she will go to college, ever have a boyfriend or get married. We don’t know if she will ever even be able to live on her own. We just don’t know.

My expectations, the ones that I had been relying on this whole time, were shattered like a mirror when I got that diagnosis. Her future, reflected in that piece of glass that I had been focusing on for 2 years, came crashing down around my feet.

Now I had a diagnosis, but I was no closer to any answers. No one could tell me how to fix it for her or what I needed to do as her mother, to make her fit into this life. Because no one knew what this life would look like for Oli.

I hung up the phone and gazed out of the window towards the mountains in the distance. Tears freely rolled down my cheeks and I made no attempt to wipe them away.

Now I knew what had happened, but I realized right at that moment, that I would never know why.

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