Phew! David is 19 years older now and we are living in the time frame that used to terrify me—we have an adult child with special needs. It’s hard and I’m a lot of ways caring for David is harder than it used to be. When all our friends had small children we were all meeting their needs. We were all exhausted. But now our friends have grown children who are independent and David still needs help with almost all activities including feeding, dressing and bathing.
Last week I had dinner with a group of friends and I was trying to convey what life looks like with an adult child with special needs. These ladies are insightful, caring and nurturing. They asked questions and wanted to understand more of what our life looks like. I felt seen and less alone. Here are some of the things I shared.
1. Caring for David moment to moment isn’t hard. Bathing him is fun! Helping him with meals is enjoyable. He’s a delight and we adore him. It’s the amount of care he needs that’s hard. He needs help all day every day and will for the rest of his life. We live with that heaviness. Our lives revolve around David’s care.
2. Life with an adult with special needs is unpredictable. We make plans and have to cancel last minute because we don’t have a caregiver. We go get to church in time but David never makes it into the sanctuary because he’s having cramping and tummy pain. We never know what an activity will look like. Please don’t stop inviting us to things and please don’t take it personally when we have to cancel last minute!
3. We don’t need pity. David is awesome. We love him and we are grateful for him. While caring for him is hard it’s also an honor and we are glad he’s part of our family. If I’m discouraged and complain—just listen. We each have our own struggles with no easy answers. The best gift you can give is to walk alongside and listen without judgement.
Are you a caregiver? Do you know someone who is a caregiver? I’d love to hear your thoughts about what daily life looks like and what you want others to know.