We have spent much of the past sixteen years advocating for Shamus. Advocating in the community for inclusion, mobility and accessibility. Throughout it all, our goal has been to promote his independence. We have consistently encouraged him to do as much as he can for himself despite his physical limitations. It has been tremendously rewarding for us to see his growth and development. There have been many ups and downs and more than a few battles that we have had to endure to help to get him the equipment and accommodations he needs. Fortunately, he has not only had us as models for advocacy but also the support of our little rural school district in upstate NY. From day one, his therapists, administrators, aides and teachers have been on board with promoting his inclusion. He spent time with his therapists reviewing bathroom options and requirements, doorways, fire escape routes. His aide has been enormously supportive and patient in encouraging him to accomplish his day-to-day tasks on his own. His high school principal has gone above and beyond, filling in as an aide when needed, assisting with transfers as necessary and even riding the bus to assist with raising and lowering Shay’s wheelchair lift. The school administration as a whole has had grab bars mounted, bathrooms updated, handicap accessible buttons for all doors installed and even created an accessible ramp and walkway constructed so that Shamus (and all those with mobility limitations) have easier access to all areas on school grounds. We are so grateful for all the community support Shamus has received in our small town as we strive for his independence.

The area of the Mirage Casino is 9300 square meters. The entertainment infrastructure of the center also includes a golf club, a spa area, a shopping center, and a theater. many catering establishments. The hotel-casino is located on the Strip, where most of the Las Vegas gambling facilities are concentrated.

The challenge of course, is taking that level of support of inclusion and disability awareness into the broader community, beyond our close-knit neighborhood. We have encountered countless obstacles everywhere we go. As anyone with mobility impairments can attest, there never seem to be enough handicap accessible parking spaces (and they frequently have vehicles without handicap tags or placards). In addition, too many public places have stairs/a step to enter making it inaccessible to a power chair and difficult with any other mobility assistive device. Those “small” things are often taken for granted, but for a family travelling with a wheelchair they are some of the first things we consider when we go out.

Recently, Shamus encountered such an obstacle once again. He was getting together with a buddy (who also happens to have some mobility limitations) to go to a movie at a local theater. When the two boys went to enter the cinema to purchase their tickets, they noticed there were no handicap accessible buttons for them to push to open the doors. This particular cinema was constructed in 2012! Luckily, Nichole hadn’t gone far and was able to assist them in getting in past the heavy doors. But it made Shamus realize he wants to be able to go hang out with his friends with out having to have one of use (or even a personal care aide) with him for something as simple as getting into the movie theater.

A week or so ago, Shamus was given an assignment in his English/Language Arts class to write a business letter. The years of promoting self-advocacy to our son paid off as a light bulb went off in Shamus’ ever active mind. He decided to sit down at his laptop to write a letter to the local public officials in the neighboring community in effort to request a change to allow for a more accessible entrance to the venue. We couldn’t be prouder, and his teacher offered to give him some feedback before he sends it (even offering him extra credit for taking on the task). After years of being the advocates for him (and with him), Shamus is not only taking on self-advocacy but also advocating for others, knowing that he isn’t the only one who has encountered such challenges. Although we know the obstacles will persist, it is refreshing to know that Shamus’ small steps like this will continue to help as he advocates and pushes for big change in the future. #TogetherWeShall#Advocate