By Elayne Pearson, C.A.S., Special-needs Preparedness Specialist, is an award-winning writer, poet, presenter, advocate, author, and actress.
It’s May, and some nice graduation announcements have arrived at the house. While I’m happy for each student, it occasionally picks at an old wound from Heidi’s high school graduation (or the lack there of). I ponder if I did the right thing by not having our painfully shy teenager participate in the formal commencement exercises like her Special Needs Educators had encouraged.
It’s hard to know whose advice to listen to.…
Back when Heidi was in preschool, Kim Peek, the autistic savant who inspired the Oscar-winning movie, Rainman, was traveling around the country sharing autism awareness. Kim was a phenomenon. When he and his father, Fran Peak, were invited to speak to a nearby Christian youth group, I was strongly prompted to attend.
The peaceful drive through rural towns with their snow-packed fields, farms, and shaggy horses felt surprisingly at home to me.
Sitting on a cold metal chair inside the beige brick church, it warmed my heart to see what unfolded. Kim’s father, or Brother Peek, as he was called, spoke of their early experiences, information about mega-savants, and the making of Rainman.
I couldn’t wait to share these tidbits with my family. Kim could recall everything he read, yet was dependent on his folks for total care. I was proud that Heidi was a high-functioning Down syndrome child, and was sweet, bright, and social.
Brother Peek concluded, and turned the mic to Kim and the audience for questions on astronomy, sports statistics, zip codes, math, world history, the Bible, or even what day of the week someone’s birthday fell on. With Kim reading about 8-10 books a day–with detailed recall–he was like a computer. Utterly amazing. I’d always remember this night, hearing Kim’s monotone verbal delivery of data, while he wandered up and down the aisles moving his fingers occasionally. His sandy-brown hair was rather unkempt around his thick glasses and virtually expressionless face.
When the microphone came by, I asked, “In the movie, Raymond’s parents placed him in a care institution. I wonder, Kim, is that also your story?”
“No,” was Kim’s reply. There was an awkward pause.
I smiled and nodded, then his dad stepped up to the podium, “We never put Kim in a facility like the movie character. Actually, we were given that advice by a neurologist, but we took him home, loved him, and worked with him.”
I never heard the remainder of the meeting. My mind detoured into the topic of parents of loved ones with disabilities using professional facilities. When Heidi was born, I recalled our nurse chatting, “Oh, you folks won’t want to ever put her in those nasty group homes for disabled adults.” (Sadly, I would believe her opinion for two decades. Eventually, I’d realize that care-facilities are helpful options for some families.)
Sitting there, I reflected on seminars, discussions, and articles by parents who truly struggled deciding to place their handicapped child/teenager/adult in various residential facilities. Some parents confided it was the best overall decision they made, freeing them up to a normal life, pursuing their careers, and financial benefits. Others admitted intense guilt, feeling misjudged, and exhausted from the bureaucratic hurdles. Other parents felt torn because various care facilities became a terrible fit for their child.
Today it remains a complicated, gut-wrenching decision.
The meeting with the Peeks concluded and the crowd diminished. I went forward, “Oh, thank you both–you’re great advocates! Autism is so interesting. You see, we have a cute little daughter with disabilities at home, named Heidi. She has Down syndrome.” Fran smiled and nodded. I turned to Kim and asked, “So, what advice would you have for my Heidi?” (I didn’t know a philosophical question can be fairly challenging for a person with autism, whose brain functions easiest with concrete subjects.)
Kim made brief eye contact with me, looked up, and thought. He turned, “Tell her to be the woman she can be.”
It was profound. As I left, it felt strange to hear Kim talk about Heidi as an adult woman. That seemed so far away.
I didn’t know that over a decade from then, Rod, Heidi, and I would be traveling that same road each weekend, with bruised, but healing hearts. At age 13, Heidi would finally be dual-diagnosed Down syndrome with late-onset autism, explaining her personality digressions. Unfortunately, she had neither the memory skill nor cooperative nature of Kim Peek. During Heidi’s high school era, she hated leaving home (and her video movies) for school, church, or anything. Baths, meals, and bedtime became beyond difficult. The health of the family became dangerously low; we knew we had to change everyone’s environment.
With exhaustion, gratitude, and worry, our family placed our special teenager in part-time professional care in the only group home in the region. With wisdom and grace beyond her norm, Heidi joined four other mildly disabled young ladies (and helpful staff) and did quite well. The first year she came home every weekend. It was bittersweet.
Curiously, Heidi’s new place was a few blocks away from that same beige brick church where I had met “the real Rainman” many years before. What a comfort when she willingly went each week with her school peers and helped clean it. On occasional visits, I watched Heidi pause and drink in the beautiful religious artwork. We were so proud of her courage.
Today, I’m relieved we didn’t insist Heidi “do” graduation. With her complex hyper-sensitivities, graduation would have been miserable with the hot robe, awkward cap, and annoying tassel. The waiting, walking, shaking hands, thunderous applause, and detested photos–would not have boosted her self-confidence.
Instead, we did Heidi’s favorite activity – soaking peacefully in a local hot springs pool while enjoying the sunset.
We’re still walking forward amid challenges – yet, Heidi continues to follow Kim’s advice… she is being the woman she can be.
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