Category Archives: children

Unfettered

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This post is somewhat of a follow up to my most recent post, “Untrammeled,” in which I spoke of the ways off-road biking has impacted our family. In this post, I’m writing to express just how much the people we’ve met along the way have impacted our family.

If you’ve read more than a few Sing. Dream. Hope. Pray. posts, you’re well aware of my thoughts and experiences regarding autism and the challenges and complexities of life as it relates to parenting a child on the autism spectrum. I’ve also written as to isolation (for both the child and parent(s)) as a high-ranking by-product of autism. The past seven years have run the gamut of these experiences—from good to bad and all points in between. Some groups and activities I thought would be beneficial have turned out to be detrimental. Conversely, there have been other endeavors we’ve undertaken with more than an ounce of guarded ambivalence and have been pleasantly surprised at the outcome. Without a doubt, mountain biking falls into this latter category.

I can’t speak for my husband, but for the first time in seven years, I feel like I’m part of a community, or village, if you will. For once, I feel like we’re not alone in this phase of life. Over the past seven years, I’ve witnessed Jackson being berated by adults for his behavior. We’ve been ostracized and literally turned away from places and events, going so far as to have doors closed in our faces. Unless you have a child with developmental challenges that, on occasion, manifest themselves in “undesirable” behavioral quirks and actions (sensory overload=flight response), you simply have no idea as to the stress a family can experience. A “thanks, but no thanks” mentality has been a prevalent theme in our lives. Until now, that is.

Our local biking community unwittingly and unintentionally provides a sense of belonging and inclusion. It’s a “safe” space and place, for not only Jackson but for our family. We’re accepted just as we are—warts and all. In typical Jackson fashion, he has the rule of the roost at our local bike trails. He’s the proverbial mayor of Club Scrub. He knows everyone and everyone knows him. When he’s at the trails, it is his domain. And the folks who share his domain couldn’t be more gracious. If you know Jackson, then you know he is all up in your business. People on the autism spectrum have difficulty realizing and navigating social boundaries, and Jackson is no different. It’s part and parcel of who he is. Blessedly, the folks we meet and spend time with, aren’t offended by this. Hallelujah! For the first time in seven years I’m not making excuses and apologies. I don’t leave the trails with tears of embarrassment, humiliation or indignation.

The grace doesn’t stop there, however. In addition to welcoming and embracing this little trio of merry makers, folks have literally taken it upon themselves to free Greg and me up to ride and participate in events singularly and as a couple by watching over Jackson at the trails. For the first time in years I’ve been afforded opportunities to socialize, participate in conversation and dare I say, make friends. Unless you’ve been marginalized by a life event, you simply cannot comprehend the overwhelming impact this gift has on a person’s quality of life.

For this acceptance and grace I offer my profound gratitude. Thank you, fellow MTBers. You are a blessing.

 

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Untrammeled

Early last year, my husband walked into a local bike shop in search of a new bike for our son. Having given up his training wheels the previous month, and having outgrown his 20” Specialized Hot Rock, Jackson needed a new bike. Greg found a suitable bike and called me to bring Jackson over for sizing and to purchase it, if appropriate. I arrived at the store within ten minutes, looked at the bike and agreed it was the bike for Jackson. I told the salesman to ring it up, only to be asked to come back the following day, as the store would be closing soon. All the while, the store’s owner looked glaringly on with nary an acknowledgement, with arms crossed, not 15 feet away.

Irritated by an utter lack of consideration and the absence of customer service, Greg and I went to another local bike shop the following morning. We found not only a bike for Jackson, but also bikes for ourselves, too. That was February 24, 2015, and our lives haven’t been the same since.

Our family has experienced so much excitement, adventure and achievement throughout the past year. We quickly became bored with pedaling around sedate trails, and graduated to single track mountain biking. Of course, with this transition came new bikes—actually several new bikes, as our individual skill levels increased.   Biking has taken the place of dinners out, weekend getaways, daytrips, shopping trips, manicures/pedicures and everything in between. Dare I say, as a trade off, our quality of overall life has increased exponentially? There is much to be said for a family sharing an interest. This past weekend, my husband and I took first place in a local co-ed, two-person endurance challenge—a feat that required incredible teamwork. Four days later and we’re still reveling in our combined accomplishment and talking about what it took to pull off this victory—not from the standpoint of gloating, but from the perspective of unified teamwork and jobs well done.

Much like my  skateboarding adventures a few years ago, biking tests my mettle and pushes me beyond my comfort zone and oftentimes, physical limits.   And also like skateboarding, when I’m on the bike I’m not thinking about anything else. I’m purely and unequivocally living in the moment.   With the myriad distractions life has to offer, there’s beauty and peace in this experience.TT Flow

Perhaps the greatest by-product of this passion is the people we’ve met and friends we’ve made. To say we’ve met the nicest people isn’t hyperbole; it’s fact. I don’t know if I should attribute it to like-minded folks sharing a passion, or if we’re just a bunch of folks hopped up on fresh air and endorphins. Whatever the case, the folks we meet are genuine, happy, encouraging and uplifting people. They tend to be salt of the earth ladies and gents—some with small(er) children like us—who are eager to take a lap with you, talk bikes and components, and share stories of epic rides and trips, and dreams for said bikes, components, rides and trips.

Oh, and the bike store experience I very purposefully opened with? I’m a firm believer that everything happens for a reason. Early on, we were experiencing continued mechanical difficulties with a bike. A Google search directed us to a bike store in West Palm—Bike America. After speaking to a gentleman by the name of “Mike Jenison,” we decided to pay them a visit. Not only did Mike steer us in the right direction, his customer service was outstanding.   And, I don’t know if it was Mike’s charming personality, stellar customer service or what, but our first bicycle upgrades happened soon thereafter. Mike and his entire crew—Drew, Bolivar and Tom—have become not only our trusted equipment advisors, but friends and cheerleaders as well. If we hadn’t been turned away from the first store we visited, we wouldn’t have had the need to seek out another shop.   You know the saying—you don’t know how good an experience actually is unless you’ve had a comparably bad experience by which to make a comparison. And I’m sorry, but I can’t not mention Julie Roberts’ character’s famous Pretty Woman quote: “Big mistake. Big. Huge.” Yeah. Indeed it was.

When I say the past year has been quite a ride, I mean it in every literal sense of the word.New Year

“Let me tell you what I think of bicycling. I think it has done more to emancipate women than anything else in the world. It gives women a feeling of freedom and self-reliance. I stand and rejoice every time I see a woman ride by on a wheel…the picture of free, untrammeled womanhood.” ~ Susan B. Anthony

Kickoff to Summer (And, cancer sucks.)

The school year ended and summer has immediately come into full swing. Jackson is already halfway through his first of four weeks of various summer camps he’ll be attending.   The following is a text I received the first day of camp from one of Jackson’s many A.R.T.S. Camp counselors.

“I can’t believe it! I am beyond proud of him. Oh, my goodness! He’s been going to all his classes and made many friends today! He’s doing the group cheer too! I’m so happy for him. He’s come so far!!! #teamjax” ~K.S.

This is the second year in a row Jackson has attended Dreyfoos School of the Arts’ summer camp.  Photo courtesy of The Muse DSOA

Photo courtesy of The Muse DSOA

This report is vastly different from updates I routinely received from last year’s camp director and dear friend, Lea Jefferson. Lea, I’m grieved to report, is no longer with us. She passed away in March after bravely and valiantly battling breast cancer.  Heaven gained an angel when Lea departed this life. She was, in my experience, a saint amongst the living. Lea’s selfless and tireless dedication to not only the kids at Alexander W. Dreyfoos School of the Arts, but to various underserved children in Palm Beach County as well, stands as a testament to her loving and giving character.  Those who knew Lea carry the treasure of her in their hearts. We are better for knowing her.

Lea literally dogged me to allow Jackson to participate in A.R.T.S. Camp. She began her campaign long before he was even of age to do so. Despite (my) great reservations, Lea was positively relentless. (I was certain Jackson’s sensory prohibitions would result in a waste of everyone’s time and efforts.) I am eternally grateful Lea didn’t allow me to blow her off. Not only Jackson’s life—but also OUR lives—are richer for her tenacious efforts. We hold the camp counselors near and dear to our hearts. Not only have they worked magic in Jackson’s life, but have become family. There are only two days of camp remaining. And once again, I am preparing to ugly cry.A.R.T.S. Camp Counselors DSOA 2 DSOA 3 DSOA 4 DSOA 5 DSOA 6 DSOA 7 DSOA 8DSOA 9