‘A’ is for Awareness!

Dear Reader,

First, a little lesson in alliteration(assonance, specifically). Alliteration is a literary device in which sequential words begin with the same letter – assonance for vowels and consonance for consonants. And April is all about Autism Awareness.

Though I’ve been marching around for 21 years, I’ve been a sister for 18.5 years to a fantastic young guy named Peter… who also happens to have autism. I can’t recall what the single-child experience is like, as I was between the ages of 0 and 2.5 before Peter came along. Anyway, as is customary with the birth of a sibling, my life was changed. But more so than the typical ‘big sister’ experience, my childhood took a dramatic turn away from the typical experience and toward one of therapy and early intervention, specialized/individualized eduation plans and rapid maturation. Two kids are tough enough, and then add autism.

We were pretty dang cute

My childhood was filled with lots of fun times for me and Pete, but be aware that it was pretty unconventional. After school, Peter would normally have speech or occupational therapy, which I would normally attend because it was either fun or extremely interesting for me. Autism affects speech and behavioral patterns and social skills, so therapy for Peter meant a mix of language therapy and developing hand-eye coordination skills. Not to mention special attention in academic subjects and learning, as those with autism are delayed in developing these skills. I would either observe these therapy sessions or engage in play, as a sibling should do. Therapy wasn’t limited to external buildings, as we would regularly have TSSs(theraputic support staff) visit our house to work on homework and social skills. I have fond memories of playing memory games or inventing new games with one of our long-lasting TSSs.

Fun as it was, make no mistake that living with autism is difficult – both for those it directly and indirectly affects. Those with autism sometimes will have tantrums if things are out of place or routine. And this can be a disastrous, deafening and destructive meltdown. Thankfully, Peter fell on the high-functioning end of the spectrum, and we were able to convince him that when he turned a certain age, these behaviors would have to stop, as he was then becoming a more mature young adult. But even despite these difficult experiences, Peter and I found a common love of Disney movies and animation, and would often recite segments of dialogue and scenarios.

Peter has an uncanny ability to recall extremely specific bits of information about movies, television and calendars. He can catch all the Easter eggs, inform you of relevant personell that usually go unnoticed in credits, engage in dialogue and tell you what day of the week August 9, 2001 was(it was a Thursday – and don’t ask me how he knows). He’s also EXTREMELY good at puzzles, especially 1000 piece puzzles. But they have to be Harry Wysocki or Kim Norlein. He’ll finish them in a matter of days.

Autism has given me an amazing brother, despite his quirks. In 2012, he was awarded Northside Common Ministry’s Celebration of Caring Award for his service at Pleasant Valley shelter here in Pittsburgh. And in June, he’ll graduate high school. As an older sister, this makes me cringe, well up with pride and also feel old. He’s been my greatest teacher throughout my life, in teaching me to stay in touch with a childlike nature, to be patient, to be responsible, to have respect, to aspire beyond what I think I can reach and to advocate for individuals like him and our family.

Sickeningly cute – what happened to us?!

Here are a few things you can do to be a part of Autism Awareness Month:

  • Sign the Pledge to Spread the Word to End the Word – promote respect and inclusion by eliminating the r-word from our vocabulary!
  • Watch this video about Spencer and Mitchel Timme to find out what living with a sibling with autism is like
  • Read this article by Ron Suskind about connecting to his son Owen through Disney movies – this really resonates with me and Peter! The book Life, Animated is out now!
  • Read the above book and/or Carly’s Voice by Arthur and Carly Fleischmann, which recounts the life of a young woman with autism and how she found her voice
  • Support Autism Speaks through Sevenly by purchasing a shirt, jewlerly, backback or any accessories! $7 of every purchase goes to Autism Speaks, and this week, your donation is doubled! Act quickly!
  • Read my other post about living with autism and how it affects my sibling experience
  • Attend the Best Buddies Concert here at Duquesne!
  • Do an act of kindness or an individual with an intellectual/social disability! Even just sharing a smile will brighten someone’s day!

Autism now affects 1 in 68 kids – you don’t need to know an individual with autism or read about the girl whose brother has autism to make a difference!

Thanks for reading,
Ellen

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