4 Ways I Manage My Guilt as a Parent of Children With Disabilities


Guilt management and parenting kids with disabilities — hard, hard, hard, hard, hard topic. For most parents, guilt can be a big part of their lives anyway. But for a lot of moms and dads who have children with disabilities, it can be immobilizing.

I’m one of those parents.

I have two kids with Down syndrome and I struggle with guilt all the time. Am I doing enough for them? Are there other therapies I don’t know about? Why does that mom seem to be able to handle everything and I can’t? What is this doing to my marriage? What about my other kids?

How can one manage with this?

I’m not a guilt management expert.

No diploma here. I didn’t take a weekend class at a hotel. I surely don’t have it all together. But I care about guilt because it is something I battle daily. Guilt can be one of the fastest fires in our lives. It will burn us out fast.

So, what can we learn about guilt management that can help?

1. Admit your guilt.

Some of us try to bury and hide that emotion. Why? Is it because we care about what others think? Um, for me, yes. But ignoring our guilt can hurt our health, families and our whole lives. You don’t have to shout it out. You don’t have to tell every person you know. But admit it. Name it and claim it … at least to one person (or to a counselor, never hurts to pay for a friend!). It can help. Trust me.

2. Let go of comparison.

Friends, comparison is quick sand. We have little energy as it is, and yet so much of it is wasted on looking around and seeing what other parents are doing. One way we can attempt to let go of comparison is to become an ally of the person with whom we compare ourselves. Ask her out to coffee. Talk about your life. Let her talk about her life. We all know the best resources are other parents. Tap into that. Odds are, you’ll have things to offer, too. And more likely than not, we are all in the same boat.

3. Take care of yourself.

This is a hard one. Every time I encourage people to take care of themselves, I get push back. And for good reason. “How can I take care of myself, I don’t have any help with my kids?” “I have to work.” “There isn’t an extra second in the day.”

I’m not going to tell you that you can find time for yourself. I’m not going to pretend to know your situation. I hate it when people do that.

Maybe there is no way to get help. I don’t know if it is impossible to do something for yourself. But I encourage you to try. Look for respite programs at churches or through the state. Ask a family member or friend to watch your kids for an hour. Buy macaroni and cheese for a meal so that you can use the extra money for coffee. I want to be sensitive, though. I know some of you will read this and still say, “Yeah, right, Gillian.”

I see you. And I care. All I’m saying is that if there is any way possible, try.

4. Set small goals to pay attention.

If you are anything like me, than I guarantee that having kids with disabilities does hard things to your marriage and to your other kids because we don’t have enough support. It just does. It helps to set really small goals. I’m talking super tiny goals to help you pay attention to the people who you love. Sit down and talk to your husband for 10 minutes. Look your kids in the eye when they get home, ask them about their day, and really listen. Show you care by writing a note or sending a short text. Of course, big gestures are great, too; date night, a movie out with one kid at a time. But if that doesn’t happen often, then set small goals to pay attention and let those small acts feed your soul and help fight your guilt.

Will this little list help?

Maybe. Maybe not. Maybe I am not helping by oversimplifying things.

I’m in a tug boat trying to make a dent in the side of an iceberg.

But I hope these few thoughts help. At best, this blog post has created five minutes in your life to think about your guilt in different ways. At least, you are reminded that you are not alone.

Because you are not alone.

Follow Gillian’s journey on Facebook.

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