When Life as a Special Needs Mom Feels Like a Game of Chutes and Ladders

Our family’s life is often like a never-ending game of Chutes and Ladders. Do you remember that game? You land on a “good” square and get to climb a ladder. If you land on a “bad” square, you slide down a chute. First one to the top wins.

Except this game never ends. There are no winners or losers. We’re all playing this game, and sometimes we land on good squares and sometimes bad ones.

I only like to talk about the ladders we take. The days we climb higher than we thought we would are the ones I like to focus on. But there are days we hit those chutes and we hit them hard. We slide down and it’s awfully hard to keep rolling that dice. But we do because, well, there really isn’t any other choice.

Today is a chute day. It started out as a ladder day, but we’re definitely sliding down some chutes.

The Bird (my daughter) woke up and was sweet, Muppety and glorious. She snuggled, loved us, smiled and made eye contact. We had fun conversations, made up songs and played games. We were climbing up those ladders.

Then lunch happened. She has been a little enamored with beans lately. Beans for every meal. This girl likes her legumes. So I made beans — homemade baked beans with all kinds of wonderful goodness in them. She even helped. We followed my aunt’s recipe last night, and we were so excited to eat them today.

First, it was cereal with Daddy for a late breakfast, then applesauce and then lunch time. Beans and eggs. I got it, Bird. I scooped up some delicious beans and put them on her plate while I was scrambling her egg.

Suddenly, beans were everywhere. Beans in my hair. Beans on the counter. Beans on the cabinet doors. Beans in Bird’s hands. She stood facing me and screaming — not any words — just a scream. We were now beyond the point where she could talk and entering the danger zone of aggression. I shut off the stove and picked her up, covered in beans, and brought her into another room to get away from the stove and things that could be easily thrown.

After lying on top of her (weight calms her down) and softly singing, she let me know she didn’t want those beans. She wanted her beans. Just a regular can of pork and beans. It was a chute.

So I made her her beans and finished her egg. But wouldn’t you know, she wanted an egg white (they are easier for me to eat and as fate would have it, she loves them, too).

And then more chutes. She wanted to go swimming, but it was raining. Even more chutes, and it’s only 1:30 in the afternoon. Today might be a day full of chutes. We will slide down, down, down.

I may end up in the middle of the floor tonight with my arms wrapped around my legs and crying because of the frustration my girl is experiencing and knowing there’s nothing I can do to fix it. There are no days with only ladders. None. But there are days with less chutes. And while playing this never-ending game is not a choice, this is what I can focus on. This life of epilepsy, autism, Ehler’s-Danlos syndrome, feeding tubes, medicines, therapies and dreams deferred is not a choice.

However, focusing on those ladders and those tiny climbs (and big climbs) is a choice. Today there are more chutes. Tomorrow there may be more ladders. Either way, I know what I will choose to focus on.

Follow this journey on Birds in the Nest.

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