Stacey Collins, Sister to Craig (55)

Previously published in PRISMS Spectrum Journal

I always knew I would become responsible for my brother Craig’s care when our mother died, yet I still felt overwhelmed when she passed away in 2007. I had so many unasked questions, so much to learn, and so many unresolved emotions to handle that I didn’t know how I was going to proceed. But I was blessed that she had worked tirelessly for 47 years for Craig’s well-being, and she had planned diligently for his future every step of the way.

Craig is now 55. I am two years younger, and I became his guardian and conservator shortly before our mother became terminally ill. When preparing to write this article, I asked myself what I wish I’d known at the time and what I think are the most important things to share based on my experiences. I’d like to start with a little background on how my mother handled having a child with Smith-Magenis Syndrome.

When Craig was born, there were no public services for anyone like him; there was no one to turn to for advice; no data or empirical information to reference. There wasn’t even a name for what he had. But my mother refused to give in to the doctors’ recommendation that he be institutionalized. Instead, she spent the next four decades fighting for and creating programs for him and others with developmental, mental, and physical challenges in our community. Thanks to her efforts, when the time came for me to become his guardian, Craig was already established in a government-run group home and had a team of people dedicated to his support and well-being.

Looking back, I realize that our family didn’t have enough in-depth conversations about Craig’s needs and how to manage them. Because our mother handled everything, my two other brothers (who are older than Craig), our father, and I didn’t fully understand how and why decisions were made and, at the time, we didn’t appreciate the importance of everyone being informed and in agreement about his care.

I wish I had asked her more specific questions about working with government officials, about his medical issues, and about how to handle his behavioral outbursts. I also wish that our entire family had discussed how we were going to work together to make sure Craig was taken care of, while also sharing our feelings and philosophies about his future.

Conversation and idea sharing have been particularly essential in the process of creating and implementing Craig’s behavior plan. All of us who care for or about someone with SMS know the syndrome entails complicated behavioral challenges. I can look back on a lifetime of successes and failures when coping with Craig’s behaviors, from charts at home to countless hours with multi-disciplinary specialists trying to figure out the best ways to anticipate, avoid, and manage negative behaviors.
We tried so many different things, including state-of-the-art therapies, medications, in-patient psychiatric care, and even police and community input on how to respond to public outbursts. Some strategies worked well for a time, while others failed right away. Our current behavior plan has been in place since 2013, and it has made an incredible difference in Craig’s life. It took more than a year to develop and it incorporates input from every person who has a role in Craig’s care, from residential staff and administrators to day program providers, family members, and Craig himself.

The key to the plan’s success is that we all stick to it diligently. If a negative behavior escalates now, it is usually because there was some inconsistency in how we acted or reacted. Craig also tracks his behaviors every day and enjoys and takes pride in following the plan.

In closing, I’d like to emphasize the following points:

The greatest gift my mother gave me was planning for my brother’s future. She never shied away from making difficult decisions she knew would help me care for Craig.

Open communication among family members and caregivers about expectations and responsibilities is essential.

Helping an SMSer manage his or her behavior requires a plan they can understand and follow, and that is implemented consistently by everyone involved in their lives.

Want to share your SMS story with the PRISMS community? You can submit your own story to the PRISMS blog by filling out our Share Your Story form.