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My brother is eight years older than me and has a developmental disability. Social events and situations can be a challenge for both him and our family. We just never know what kind of mood he’ll be in on event day or how he’ll receive the other attendees. With so many unknowns, my family chooses to focus on what is in our control.

Over the 20 years we have been entertaining friends and family, we have determined some of our best practices for hosting or attending a social event with my brother. Our tried-and-true tips include talking about the event in advance, anticipating potential issues, and setting boundaries around expected behavior.

Talking About the Event   

My brother needs time to think things through. If you asked him if he’d like to see the latest action movie tonight at a drive-in theatre (his most favorite activity in the world), he would say no.

My brother is also best with routine and familiar surroundings. I often have to plan his birthday get together on a day around his regular activities such as going to bingo.

He likes to know what to expect as far as activities and events.

We start talking about the event just a few days before. We want the conversation to be fresh but yet still give my brother time to digest the information.

We also like to let attending friends and family members know that my brother will be there and explain some of his nuances and behaviors. We especially like to give the first-timers a heads up on what to expect. If our friends and family have children, we ask that they explain my brother to them before arriving.

Anticipating Potential Issues

We try to put ourselves in my brother’s shoes and think about the event from his perspective. We ask ourselves questions like:

“Who is going to be there that may bug him or he has already expressed dislike for?” My brother has a preference for females in general and has a bit of jealousy for men his age who are dating or married.

“What time of day is the event?” My brother can be a bear at certain times of day. This usually coincides with not eating something first or being ‘hangry’.

“Does this event conflict with any of his normal routines?” My brother is a creature of habit so he prefers life not disrupting his normal bingo or movie nights.

“Can he get there himself or will someone need to take him?” My brother can drive himself, but only in familiar territory.

“Does he have something to wear?” My brother’s preferred outfit is a jogging suit or cotton shorts and a matching t-shirt. He also doesn’t easily fit into standard size clothing without alterations.

“If he doesn’t want to go, does he have to go or is he optional?” If it’s not a lifetime event like a wedding, annual holiday or milestone birthday party…he can decide if he wants to go. We’ve learned from past experiences that forcing him to go to something he doesn’t want to will not be enjoyable for anyone.

Setting Behavioral Boundaries

Telling my brother that his behavior is inappropriate or unacceptable, doesn’t mean he won’t do it again.

Similar to a young child, he needs lots of positive and negative reinforcement.

When he displays good behavior by showing up cleanly shaven, smelling good, smiling and in a great mood – we hug him and comment on it right away. This sets the stage for a great event.

Sometimes my brother can cuss around children, raise his voice, take too large of a portion, or touch someone he just met too frequently. When this happens, one of us will immediately remind him that his behavior is inappropriate or unacceptable and needs to stop.

However, just because we tell him to stop doesn’t necessarily mean he will. We’ve had handfuls of social events where we have warned him that he will need to leave if his negative behavior continues. Sometimes there is just no reasoning with him and he has had to leave.

Like most families, we are constantly trying and adopting new techniques and ways to better communicate with my brother. The most important thing we continually do is remind him that he is a loved and welcomed part of our family.

 

Elizabeth Miller is a family caregiver and a Certified Caregiving Consultant (CCC). Her personal experiences caring for aging parents with chronic and terminal illnesses as well as caring for a sibling with developmental disabilities (while working full-time and raising teenagers) inspired her to create Happy Healthy Caregiver. Elizabeth is a national speaker, workshop leader, and global advocate for family caregivers. Through her consulting services and free resources, Elizabeth helps family caregivers integrate caregiving with their busy lives. She also leads the Atlanta Daughterhood Circle– a social support group for family caregivers.