Tooele Transcript Bulletin – News in Tooele, Utah

May 11, 2017
Grappling with genius, goals and special-needs graduation

It’s May and graduation announcements are arriving. While I’m happy for each student, it occasionally picks at an old wound from Heidi’s high school graduation (or the lack thereof).

I ponder if we did the right thing by not having our painfully shy, disabled daughter, participate in commencement exercises.

It’s often hard to know whose advice to take.

Back when Heidi was in preschool, Kim Peek, the autistic savant who inspired the movie “Rainman,” was traveling and sharing autism awareness. Kim Peek was a phenomenon. When he and his father were invited to speak in our region, I was strongly prompted to attend.

Inside the beige brick church, it warmed my heart to see Kim Peek’s dedicated father, Fran Peek, share their experiences, information about megasavants, and the making of “Rainman.” He also bore a sincere testimony of God’s love for each one.

Hearing that Kim Peek was a genius, but totally dependent on his folks, induced a sense of pride in me that Heidi was a happy, high-functioning Down syndrome child.

Fran Peek turned the microphone to Kim Peek for audience questions on astronomy, sports statistics, zip codes, math, world history, the Bible, or even what day of the week someone’s birthday fell on. Kim Peek was like a computer. It was amazing observing his monotone verbal delivery of data, while he wandered the aisles. His sandy-brown hair bordered his thick glasses and virtually expressionless face.

When the microphone came near, I asked, “In the movie, Raymond’s parents placed him in a care institution. I wonder, Kim, is that also your story?”

“No,” Kim Peek replied.

His dad stepped to the podium.

“We never put Kim in a facility like the movie,” said Fran Peek. “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. I recalled soon after Heidi was born, 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 options. Some parents confided it was the best overall decision they made, freeing them up for a normal life. Others admitted intense guilt, feeling judged, and exhausted from the bureaucratic hurdles. Some hopeful parents became despondent because various care facilities became a terrible fit for their beloved child.

It remains a complicated, gut-wrenching decision.

The meeting with the Peeks concluded and I moved forward, “Oh, thank you both — you’re great advocates! Autism is fascinating. You see, we have a cute little daughter with disabilities at home, named Heidi. She has Down syndrome.”

Fran Peek smiled and commented. I turned to Kim, “So, what advice would you have for my Heidi?” (I didn’t know a philosophical question is fairly challenging for an autistic person, whose brain functions easiest with concrete subjects.)

Kim Peek looked at me briefly, then looked up in thought. He next looked into my eyes and said, “Tell her to be the woman she can be.”

It was profound. As I left, it felt strange to hear Kim Peek talk about Heidi as an adult woman. That seemed so far away. “Please, Lord, help our family.”

I didn’t know that over a decade from then, my husband Rod, Heidi, and I would travel that same road each weekend, with bruised, but healing hearts. At age 13, Heidi was finally 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 resisted leaving home (and her video movies) for school, church or anything. Baths, meals and bedtime became beyond difficult, and Rod and my health became dangerously low. We knew we had to change everyone’s environment.

With exhaustion, gratitude — and worry — we placed our vulnerable teenager in part-time professional care. With wisdom and grace beyond her norm, Heidi joined four other mildly disabled young ladies (and small staff) and did quite well.

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. 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, sitting, shaking hands, thunderous applause, shrill whistles, and detested photos, would not have boosted her self-confidence.

Instead, we celebrated with 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.

Elayne Pearson, C.A.S., Special-needs Preparedness Specialist, is an award-winning writer, advocate and national speaker. To invite her to present, or to give her feedback, send email to: HiddenTreasuresOfHealth@yahoo.com and/or visit www.HiddenTreasuresOfHealth.com 

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