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Advice to my Younger Self.

How my nonverbal child helped me discover life's greatest lesson and find the voice to share it.

From the time we’re young, people say, “respect your elders.” As kids, we experience a little fear around this. What will those older people have to say about what I’m doing? What will they think of me?

By the time we’re teenagers, we’ve mastered the art of the eye-roll when unwanted advice interrupts the air waves around us (waves that are designed strictly to carry the tunes of hip music or ideas shared by peers who are, in our minds, the only ones on the planet with any intelligence or insight).

Then we reach adulthood ourselves. Hopefully we have few, if any, real regrets…but we know that because of our experiences, we’ve earned the right to be advice-givers to the youth around us. Perhaps our comments trigger a new generation of eye-rollers – but we’re okay with that. We share what we’ve learned, they roll the eyes. And yet we’re optimistic that something we’ve said will resonate.

What really resonates, however, is the eye-opening experience of hearing ourselves say out loud the advice we really wish we’d been given ourselves.

From the time I was young, I always “marched to the beat of my own drum.” I always felt different from everyone around me. Like many kids, I was hyper-aware of reactions from others and assumed I was constantly being judged. I lived in a constant state of worry and fear, and all of this created a “doom loop” of negative self-talk which squelched my spirit.

Then I became a mom to a child with Autism Spectrum Disorder – and everything WAS different. While other moms were coordinating logistics for themed birthday parties, I was scheduling occupational therapy sessions aligned with a massive IEP document. While other moms engaged in friendly conversations with one another at the park, I was on my phone fighting for additional services. While some parents were making weekly date nights a tradition, my husband and I were just vying for a full night of sleep. While everyone around me seemed to be thriving, we were simply surviving. We were certainly marching to the beat of our own drum, just as I had done growing up, but it was a song that seemed confusing and not easy to march to. The challenges we faced were unique, often misunderstood, and sometimes seemed insurmountable. But they also came with great learning opportunities – and a chance to discover the greatest advice I wish I could have given the teenage version of myself:

Honor individuality.

When you love someone with Autism, everything is individualized. From finding a restaurant that will accommodate dietary restrictions to attending a movie on a night designated for people who are sensitive to noise, it’s all about customizing each experience to meet the needs of the person you love. You are constantly researching the environments that will best suit the complex communication, social, and behavioral challenges that come with this neurological disorder. Although incredibly painful at times, it has helped me understand the fact that when we honor the individuality of others (and ourselves), life can be more joyful and fulfilling.

This concept of honoring individuality really came to life for me when it was time to consider full-time residential placement for our son. I had experienced certain “tests” along the way which challenged my ability to overlook judgements from others, like choosing to stay at home to raise my children in lieu of working outside the home (which, I would argue, was far more difficult most days!). But knowing that my son needed an atmosphere that was truly designed to meet his educational, residential, and vocational training needs meant that I had to be at peace with others questioning our decisions.

And question they did. I encountered inquiries like “How could you send your child away?” and “How could you let strangers care for your son?” Imagine what that feels like. The situation is already devastating. Now I needed to find a way to let myself merely hear what they were saying, but only truly LISTEN to what my own heart was telling me. Not an easy task.

When we went to Anderson Center for Autism, it was clear that this was where Joey needed to be. The staff, teachers, executive team were warm, welcoming, and knowledgeable. The riverfront campus was not only stunningly beautiful but meticulously designed to ensure safety and comfort for every student. The residences were clean, neat, and full of picture boards for children like my son who needed extra help communicating. The activities and training would give him a chance to really shine. And, perhaps most importantly, I couldn’t tell the difference between staff and students because none of the residents were ‘talked down to’: there was mutual respect. There was a sense that every individual had something to share – an honoring of one another’s individuality. As I pulled out through the gates of the campus that day, I felt a brightness in my heart I had not yet experienced; I knew this was what we needed to do. I knew it was what I wanted for Joey. I knew it would meet his very specific needs, and it was my job to honor those needs in spite of what everyone else might think.

It didn’t matter what expectations others had of him, of my husband and I, or what expectations society tends to impose on all of us. This was about his individual needs, and enrolling him was the best decision we ever made.

Today, when I visit him there and I see his progress and hear his laughter, I’m reminded that the decision to move him to a place that met HIS needs has helped transform his life. Joey’s happiness is symbolic of a lesson I now want to share far and wide with people of all ages: honor the individuality of others …and honor your own individuality. Not easy to do in an age of social media or given our own vulnerabilities as humans, but it’s only when you are true to this lesson that you can find real joy.

You may find yourself marching to the beat of your own drum as I’ve always done over the years, which at first may feel a bit uncomfortable. But you’ll discover that your drumbeat creates a song for your life that is full of brightness even in the face of challenges.

Sometimes it takes someone who is nonverbal to help us find our voice or to teach us the lesson we most want to share once that voice has been revealed. Hopefully, those of us who have made big discoveries because of experiences like ours can now vocalize what we’ve learned to help others. Regardless of the contest, the lesson is a good one to live by. And regardless of eye rolls, I sure hope it resonates.

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