A Story of Two Girls

I want to take the time today to share a story about two wonderful girls in my life.  Seeing their struggles and triumphs not only has brought me closer to them, but also encouraged me to become an advocate for a special cause.

While I was doing my graduate studies, my sister and new brother-in-law informed me that they were expecting.  I was so exited to be an uncle!  I probably don’t have to tell most people how incredible a child’s laugh or hug is for the soul.  My niece was born nearly 11 years ago now.  If she wasn’t cute enough, by the time her hair really started coming in, she had the most beautiful mop of curls.

She seemed to be developing so rapidly.  By about 1 1/2 she had developed a fairly normal vocabulary.  She would laugh and play.  At two, she would sit on my lap at the computer and pick out each letter that I would ask her to.  Then, slowly but surely, she began to turn more and more inward.  Her talking seemed to stop almost altogether.  What would be normal tantrums for other little ones turned to off the charts ballistic.  In our town we have a great early childhood program.  My niece was evaluated, and the verdict that came back was just as my sister and b-i-l feared: autism.

Not wanting autism to define her life, my sister and her family did everything they could to help her.  Sometimes it was frustrating, such as still having to wear diapers at four years old.  Sometimes exhilarating, like when we would see her flashes of brilliance.  Today she is classified as “high functioning”.  I don’t particularly like this phrase, because it makes her sound like some kind of advanced robot, but it is what we have.  By nearly all measures she is a normal tween.  The only things that we notice is that she can be particularly sensitive at times, and also seems to sometimes have problems processing idioms and other figures of speech.  She is one of my heroes.  She inspires me so much.

My next niece was born two years later.  I am pretty sure she was one of the cutest babies that have ever been born.  Although she didn’t seem to have any problems with motor skills, her speech didn’t develop as quickly as her sister.  She did seem to be a little quieter (but isn’t this normal for second children?) but also withdrawn.  Once again the experts came in, and once again delivered the devastating news: autism.

I wish I could say that she shook it off like her big sister.  I can’t.  At almost nine years old, she still seems to be trapped in her own mind.  She is a brilliant girl.  She loves to read, has handwriting that is better than many adults, and can play melodies on the piano by ear.  She just has a problem relating to other people.  She knows many words but shares few.  She doesn’t know how to express herself when she is upset or frustrated.  But she is beautiful and just as inspiring as her older sister.  Not much can compare to when she gives me a hug and says, “I love you.”

April is autism awareness month.  Autism spectrum disorders affect an estimated 3 to 6 out of every 1000 children.  Boys are 4 times as likely to develop an ASD than girls. Through treatment and medication, symptoms can improve.  There is no cure, however.  Citation

Social media is a great way to spread autism awareness.  With facebook, blogs, and twitter, we can get the word out that kids with ASD are more normal than we give them credit for.  For more information, visit Autism Speaks, a leading organization in autism awareness and a wonderful resource.

TUESDAY FUN: An Inspirational Story

You may have already seen this, as the story is a few years old.  But the actual story will never get old for me.


Filed under Autism

5 responses to “A Story of Two Girls

  1. Thanks so much for sharing your experiences with your nieces, Ryan. I enjoyed the read very much, and it was quite enlightening. It’s greast that you’ve enlightened so many more people on the fact that these children are special and beautiful in their own right. 🙂

  2. Thanks for the comment. Having these wonderful girls in my life has made me much more comfortable around those whose “abilities” and “disabilities” are different from mine. I just wish that for me and for others that feeling of compassion and understanding would be more of an instinct than a learned behavior. They have taught me more than I can ever teach them.

  3. Thanks for sharing that! My son, who is also “high-functioning,” is doing well and that has everything to do with early intervention.
    I’m glad the girls are doing well. Girls, while not as likely to be diagnosed with ASD, are usually on the more severe end of the spectrum. I’m glad they were diagnosed early and received the resources they needed.

  4. Early diagnosis and intervention were definately assets. My b-i-l is looking for a different job, I am praying if they land in a different city that they have programs that are as beneficial as the ones we have here.

  5. Pingback: Two Girls Revisited | reclaiming ryan

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