Lilia was born with a rare genetic syndrome, GATAD2B-Associated NeuroDevelopmental Disorder, also known by the acronym GAND. She was the 14th person in the world diagnosed, and there are currently only 60 known cases. GAND affects Lilia in multiple ways that include both physical and cognitive challenges.
Because both balance and vision are affected, Lilia has not yet been able to independently ride a two-wheel bicycle. She can ride a tricycle on her own, and our longer rides are with a Burley Kazoo Trailercycle, which attaches to the back of my bike, allowing her to pedal or coast while giving me control of steering and braking. She also participates in several adaptive sports, including snow and water skiing.
Lilia is an amazing girl with an adventurous spirit. She loves traveling and exploring new places. Packing for a trip, eating, sleeping, and playing in a new place, are all activities Lilia loves to do. It’s true that she can become overwhelmed, particularly in noisy or crowded places, but while Lilia has challenges that she will have to deal with for her whole life, there is no reason why these should limit her ability to live a rich life, engaging with our wondrous world.
I think there is a tendency for parents of kids with special needs to want to protect and shelter them. Of course, I always want Lilia to be safe and secure, but there is nothing in her disability that would preclude her from getting the most out of life, and it is clear that the wonderful experience of bicycle travel is something that Lilia loves. It has the potential to enrich her life in many ways. She still gets excited when she looks back at pictures from our bike trip, and when her therapist asked her how she felt afterward, she said, “I’m brave!” I want to keep showing her that she can conquer her fears and rely on her inner strength to enjoy new things.
Bicycle Adventurers: Myself and my eleven-year-old daughter Lilia who often accompanies me on bike rides and other adventures.
The Route: From our home in Chicago, we rode to the beautiful North Branch Trail, up to Chicago Botanic Gardens, and returned south via a lesser-known gem, the Green Bay Trail.
When: We headed out on a beautiful day in September. We quickly warmed up, taking off our fleece jackets and riding in shirt sleeves in abundant sunshine.
Accommodations: Although Lilia has done longer, full-day bike rides with me and has been enjoying tent camping for the last few summers, I felt that for her first bike overnight, to keep things simple and give her the best chance at having a really positive experience, it would be best not to combine the two. So I booked a night at a hotel with a pool near the bike path.
Distance: One of our local trail advocacy groups, Trails for Illinois, has a slogan that I love, “Make Your Home Your Trailhead.” Taking that to heart, Lilia and I began our trip from our home on the northwest side of Chicago to the recently extended southern terminus of the North Branch Trail. For 18 miles, the well-paved path runs through Cook County Forest preserves to our lunch stop a Chicago Botanic Gardens with several rest and play stops along the way.
Favorite Bike Shop: The Bike Rack's adaptive bike organization, Project Mobility, has done a lot to help Lilia, and they work with us to help her take the next step towards independent cycling with an adaptive trike.
Tips and Tricks: We definitely brought some of Lilia’s favorite toys, including a full complement of her favorite Paw Patrol friends. We also did bring an iPad, which was useful at the hotel and restaurant.
One of the most scenic spots on the North Branch Trail is a series of pools and channels known as the Skokie Lagoons. You can rent a kayak or canoe, fish, or just play around the water’s edge, exploring the bugs and minnows in the shallows. Stops along the way like this one are an important way to enjoy the journey, keeping the experience from becoming just a bike ride from point A to point B.
Another way in which we added an element of excitement and expectation is that we arranged for my wife Tina to meet us at Skokie Lagoons and ride the last few miles with us to our lunch stop at the Botanic Gardens. I reminded Lilia along the way how proud I was of her and how I couldn’t wait to tell Mom how proud I was of her. When we pulled in, we saw our minivan. The three of us spread a picnic blanket on the grass and had a few snacks and juice. Lilia was excited to meet up with Mom and show what a biking champ she is on our final push to our lunch stop.
During our stop at the Gardens, we had to adapt to keep Lilia from becoming overwhelmed. Because it was such a beautiful day, the cafe was quite crowded. Initially, we went in and tried to navigate the hustle and bustle of the food lines and find a table, but it soon become clear that Lilia was on the verge of a meltdown. We quickly adapted, grabbed some food to go, and headed outside for an impromptu peaceful picnic. The crisis was averted and everyone was happy!
Departing the Gardens, we hopped on another recent connector to the area’s trail system, the North Branch Trail Addition, which runs through peaceful Turnbull Woods, parallel to the very busy Lake Cook Road, and connects seamlessly to the lesser-traveled Green Bay Road Trail. Parts of this path are smooth crushed limestone, and others are paved. The trail scenery changes frequently from tree-lined, shaded canopy to a golf course and suburban parks.
There are several non-contiguous sections where you’re riding on low traffic streets. I vastly prefer a loop as opposed to an out-and-back, and taking the southbound Green Bay Road Trail allows us to see new scenery rather than retracing our steps. Our destination was a hotel in suburban Skokie, Illinois, about three miles off the trail. After checking into our hotel, we decided to hop in an Uber for a short trip to the always fun Westfield Old Orchard outdoor shopping mall. Lilia loved the very cool outdoor mall playground. We also enjoyed a visit to the two-floor Barnes and Noble book store with its large kids’ section.
Finally, we had a very nice evening meal at The Bagel Restaurant and Deli. As we were ready to head back to the hotel, the skies opened up with a summer shower, so we hopped in another Uber for a five-minute ride back to the hotel.
After a restful night, we decided to go for a dip in the hotel’s indoor pool. In plotting our route home, I realized we were only a short distance from the Skokie Summer Camp Lilia had attended during the summer, which meant we were close to another lesser-known bike path that she and I often used to commute to camp. The Valley Line Trail, which becomes the Sauganash Trail in Chicago, was the perfect final connector to take us within a half-mile from our home. We even stayed off-street for the final blocks by cutting through Peterson Park, one of Chicago’s largest parks.
Completing the entire trip from our front door and back again on local trails was a thrill. Truly, we had made our home the trailhead.
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Leal, thank you for your information !! I got some good ideas for long distance cycling ?????