Our Autism + Bike Riding Journey

Our journey to the TerraTrike Rover Tandem Tricycle has been a few years in the making so I am sharing the details to help other families as they begin to plan for the process with their own kids.

First, a little bit of back story....

Our son Jonah, is now 21 and stands at 5'11". He is autistic and home with us full time and the task to find enriching life experiences to fill his days has been challenging to say the least. When he was16 or so, we purchased a tandem bike so we could take him for rides. It was a great idea and he loved the activity but there were a few problems with it.

The biggest issue was the way that most tandem bikes are designed for the taller rider to be in the front seat. The was problematic for us since Jonah's unpredictable behaviors and lack of self control, coupled with executive functioning delays made it so that being in the captain's seat was not an option for him. But at only 5'1" tall, this little mama was not able to adequately overcome his tendency to literally throw his weight around. If I wanted to turn right and he wanted to turn left, he would lean so hard in his preferred direction that it was hard for me to keep the bike upright. I could barely touch the ground and keeping us safe and stable on our ride was an impossible task for me. He could ride with dad, but that didn't help us with filling our days while dad was at work. So we eventually donated the bike to an organization that outfits special needs riders with bike options.

Last summer, Jonah began expressing an interest in riding again. At the time we had a friend who would spend a little time with Jonah and he had a tandem bike. He was taller and stronger and pretty athletic and Jonah loved going for rides with him until the snow made it impossible.

As spring rolled around this year, Jonah started asking for bike rides again so I started the search for something that would work for us. The first option that I found was the Worksman Tandem Trike. At first this seemed like a great option for us. With the added shipping cost, it would be about $1,900.00

I contacted our social worker to ask if this is something we could use Jonah's Waiver Funds for. She initially got it approved though they added stipulations later on. She did ask for a letter of recommendation from a doctor or therapist so we got one from his phgyciattist, though we found later that it was not going to be sufficient.

In the meantime, I contacted Worksmen so ask some questions about shipping prices, delivery time as well as the concern with our hight difference. They informed me that the back riders handlebars are attached to the front riders seat so if I had to have it in the lowest position, that was going to make Jonah have to hunch over pretty far. They couldn't recommend it for us as they said it would make for a rather uncomfortable ride. They also said it would take 10 to 12 weeks before it shipped so we wouldn't even have it for this summer. So it was back to the search for something else.

We went to visit a local bike shop where their specialist talked with us and recommended one of these two bikes, based on Jonah's needs.

Both of these were considerable more money than what we had looked at before ($5,000 more) so I called the social worker again to find out if they would still approve it. While I waited to hear back, I started looking into other bike options in that price range. My concern with both of these was that they were very heavy, wouldn't be as easy to transport and also gave Jonah too much access to the steering which could pose a safety concern. That is when I found the TerraTrike Rover, a tandem recumbent trike. It looked like it could be the perfect fit for our needs and I was able to find one, 4 hours away at a bike shop in Wisconsin for $3,500 including assembly.

In the meantime, I heard back from the County that they would only approve the purchase if Jonah first went though an thorough evaluation by a physical or occupational therapist who could write a recommendation letter which included detailed information on why this purchase was needed and would benefit Jonah. I began calling around and found that the waiting list for this appointment was so long that our dreams of riding a bike this year were doubtful at best.

But that is when something really amazing happened. I was sharing on Instagram, the frustration I had with all the hoops we needed to jump through and how discouraged I was. A follower named Jill from Sunny Days Therapy messaged me and said she was following our story and thought she could help. She found me an appointment at one of their locations for the following week and set us up with at OT who was so excited to help Jonah get his Bike.

5 days later we were at their sensory gym getting a thorough evaluation done and 24 hours later we had the letter in hand. I will include some of the verbiage here in case you are needed to get a similar letter.

To Whom It May Concern:

Jonah attended an Occupational Therapy evaluation on July 11, 2023 to assess motor skills, executive functioning, regulation, and safety for recommendation of a tandem recumbent tricycle. Areas of concern identified from the evaluation include executive functioning and emotional regulation.

We are recommending the purchase of the item (or an item similar to) listed below as a part of home programming to support Jonah’s physical and mental health along with community engagement. Jonah and his mother have expressed motivation in using this item to facilitate

progress within the home environment. Jonah participated in a comprehensive evaluation assessing his motor skills, executive functioning, regulation, and safety awareness and it was determined that the tricycle listed below (or one similar to) would allow for the most independence with cycling while maintaining safety and supporting regulation.

• The recumbent tricycle would provide additional support/stability for Jonah and a riding partner in the event that Jonah experiences a period of dysregulation. Additionally, the steering mechanism and brakes located on the front of the tricycle allows for the riding partner to have control over the tricycle to support safe cycling within the community.

Jonah would benefit from the item (or one similar to) listed above as it would provide opportunities for improved strength and endurance, mental health and regulation, and community engagement. It is recommended that funds are also provided for appropriate safety equipment.

With this letter, we were approved for the purchase and I immediately contacted the shop where we found one in stock. I was told that they would not begin to assemble it until payment was made and that it would take 3 to 5 days for the actual assembly. I did so right away and we scheduled to pick it up a week later.

The shop told us to plan for about 2 hours for the final fitting and trial so with the 4 hour drive to get there, this made for a 10 hour day... But it was so worth it. The team at Hostel Shop were so detailed and helpful it getting everything fitted and set up to meet all our needs. Seat & handlebar adjustments as well as adding all the extras (flag, lights, mirror, bottle holder). With the extras that we added, the total cost came to $4,473.00. This was all reimbursed though Jonah's waiver funds.

We have ridden our trike every single day since the day we got it and it is everything we hoped it would be. Jonah loves it! I love it! It has indeed helped us to be healthier, body, mind & soul! We load it in the van almost everyday and head out to beautiful trails for long rides. Our longest so far is 17 Miles!

Jonah sings and chats and wants to go further and further with every ride. We've got muscles in our legs and air in our lungs and smiles for miles!

If your family would benefit from a tandem bike, here are a few things to start looking into now.

Funding: If you have a social worker, check in with them about available funds though the county or other charitable organizations. in your area.

Assessment: If you will need to have an assessment done to qualify for the purchase, start looking for those ahead of time as many of them will have long wait lists.

Purchase: When you find the bike you think you want, call and ask questions and expect a long delivery time if not purchasing locally. Even with local purchasing, you may need to wait for the bike to be assembled.

Transporting: Tandem bikes are LONG and some are heavy. Keep in mind how you will transport it if needed or if you have adequate riding options around your house.

Riding: This has been a great exercise option for us but it has taken some time to build up the muscle and stamina. Don't get discouraged if you are in all kinds of pain after your first few rides. It gets better with time.

I hope these details are helpful for your family if you are thinking about a similar purchase. Feel free to ask me any questions you may have about the process and I will try to help if I can. And follow along on Instagram for our daily life, including our bike rides.