May 23, 2024 | By: Maureen Benschoter
Categories: Family Support
Sometimes I feel like I’m two different people. I’m the upbeat, energized mom who gets stuff done for her child with disabilities. The mom who wakes up at 3:00 a.m., heart pounding in a panic. I’m the mom who cries in the shower in sheer frustration and exhaustion. The doer, getting things done, pulling the team together and coming up with a plan. At the same time, I’m frequently overwhelmed and discouraged.
I couldn’t love my son more. His smile is pure joy. The fact that he is living and thriving is a miracle. His laughter is contagious. Anyone who knows him falls in love with him.
But this life is hard. The responsibility of it all weighs me down. I keep track of so much medical information, make legal arrangements and organize documents. I try to find meaningful activities and feel guilty if I miss an opportunity.
I worry about messing up his government benefits and making hard choices when there are no good options. And of course, the big one: planning for his care after I’m gone. These are all really hard things. Anyone would feel smacked down by it all sometimes.
And yet, I do take good care of my son. I mostly stay on top of all the details and usually do a good job managing everything. I’m not faking it when I’m organized and energized and reaching out to help other parents.
To keep my sanity, I must find a way to hold these conflicting emotions and experiences all at the same time because they are all real and true.
I try to honor and acknowledge the positives and negatives and remember to be kind to myself. Self-compassion is one way to be kind to yourself. When I say aloud, “This is hard!” I’m practicing self-compassion. It helps.
Another huge help is knowing other mothers in similar situations. The more their child is like mine, the more we lean on one another. Some of these women I have known for years. We have lived through similar highs and lows with our kids. I rely on them for practical support because getting reliable answers to the never-ending questions does help relieve stress.
But I also crave the deep understanding that they can give. They get it. They’ve been there. I know they speak honestly when they say, “You’re right. This is hard.”
Your emergency plans might look different, but no matter how they look, they can make all the difference.
Categories: Family Support
Despite doubt from others, a parent’s careful attention to her son’s verbal and nonverbal cues highlights the importance of listening to children with disabilities and advocating for their needs.
Categories: Family Support
Having a child with autism adds some entertainment to our lives, especially if they are verbal. Sometimes, their words can make you laugh when you look back.
Categories: Family Support