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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7 Responses to “If she was autistic…where did that leave me?”

  1. womanunadorned June 7, 2013 at 10:02 pm #

    I didn’t know this about blind kids, that they show some of these things and it can get confused with autism. It’s just the sort of detail you don’t hear. Thanks for sharing this.

    • mommyhasissues June 8, 2013 at 2:20 am #

      Thanks for reading! Yep. Lots of people don’t know that blindisms and autistic behavior look very very similar. There’s lots of head shaking, flapping, spinning, mouthing, and other things that look just like autism in our kids but are not.

  2. tric June 7, 2013 at 10:29 pm #

    You bring your past to life so well. I read these posts but keep in mind the lovely birthday post picture tribute you did to you lovely Oli. As for your crier Ginger, I can so relate to that!

    • mommyhasissues June 8, 2013 at 2:18 am #

      Ugghh. The crying! That girl was birth control for me FOR SURE! Anytime I get that crazy baby itch, I remember all the screaming and I’m cured. 🙂

    • Ali March 22, 2014 at 4:34 pm #

      I had no idea that autism was so perlavent, though it does seem that I know more people than ever with children who’ve received that diagnosis. The more we know, the more we share, the more we can provide support or find the support we need. Your blogging friends will be here for you, wishing your family an abundance of strength, courage and love in the years to come.

  3. It's Not My Workout, It's My Diagnosis June 8, 2013 at 2:03 am #

    Oh my gosh, this post really got to me. My daughter has a life threatening disease she battles daily and I had the same feelings as you. I probably still do. It seems too much for a kid to go through, and we, as parents aren’t told how to act or what to do. We did not sign up for this but we must push forward through all of the hard stuff because we love our kiddos and want the best for them. I had a hard time finding my new identity because people tried to make me seem like supermom. “I don’t know how you do it.” “I look up to you, you are an awesome mom.” Um, no. I am a mom who doesn’t know what the hell she is doing, but occasionally, I wear lipgloss to feel put together lol. Hugs to you. 😉

    • mommyhasissues June 8, 2013 at 2:17 am #

      Thank you! And hugs to you. I struggle with the identity supermom thing too. I don’t know what I’m doing half the time either. I’m just loving my kids and trying to do the best I can. Most moms in my shoes would do the same thing. It’s not anything extraordinary.

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