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To the Special Needs Parents Trying to Figure Out Their Guilt

Our kids can take a lot of management, for a lack of a better term. We have to manage their schedules, their food, their environment. There are doctor’s appointments, case managers, therapy appointments, pharmacies, teachers, insurance companies, almost an endless list of people we need to call or email each day. In my experience so far, one parent (or the parent if you are the only one) becomes responsible for management. Each family finds their own way.

Sometimes one parent works. Sometimes both parents work. The money it takes for all of this, even with state assistance, is staggering.

What this all brings is guilt. Mommy guilt, daddy guilt, guardian guilt. There is only so much time in a day, and there are things that have to be done. The laundry, the groceries, or even working to survive. There is no way we can exist without doing these vital things, but taking any time away from your children can make you feel horrible.

You can be a stay-at-home mom who rarely gets to spend any time with any of your kids. You could be the working parent whose son tells his class Dad’s favorite thing to do is work. There is no easy answer. I’m not writing this to try and give you one right now. What I want to do is figure out a way to make this unavoidable guilt a little easier for you to bear. parker in a swing

You know, they always say our kids are so different. This may be true, but there are so many similar things we all experience in these uncharted waters. We tend to hold everything in thinking no one can understand what we’re dealing with.

First, I want to tell you that you are not alone. Recently another mother of a child with autism started telling me about how she felt so guilty because the time she should be spending with her youngest she had to use to make these necessary calls and arrangements. The things she was saying could have been coming from my own mouth. Then I heard it
again from another mom. A father mentioned how he feels guilt when, after working a long week to support his family or working that extra side job to save money for something crucial to his child’s well being, he needs to take time for himself to keep his head grounded.

It doesn’t matter what type of parent you are, you are always going to feel like you’re not doing enough. It is the nature of loving your child to want the absolute best for them.

boys easter egg hunting

Next, I want you to know that there are people who understand.

They may not be right next door. They may be someone you see in a waiting room or talk to online. It doesn’t matter who or where they are. What matters is you share the load of guilt you’re feeling. You share the ridiculous nature of the life we lead. Find. Your. Village. If you can’t find one? Come find me.

On that note, I can’t help myself but mention this: If someone shares with you? Be supportive. Take the time to listen when someone opens up. You may be the first one they’ve told. Do not be judgmental. Our life is not a competition. We are all just trying to get by, one day at a time. There are far too many divisions in these communities that only serve to give more guilt and anger.

Lastly, if you find a way to handle this guilt, please share it with the rest of us.

We can all use a little more help.

The Mighty is asking its readers the following: What’s one secret about you or your loved one’s disability and/or disease that no one talks about? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.