The Inability To ‘Just Be’

61172ec14fa94b82c3ff20ca3bb6c752I think a lot about the hardest parts of autism…or Cooper’s autism I guess.

There are days when I think the whining is the worst. Or his eating habits. Or the throwing.

It can vary and probably has a lot to do with how tired I am or worn down at that moment. Some days I can take on anything. I am a rock. And some days I feel like I can’t take it anymore.

There are days where I feel like I won’t survive fighting over another dinner. Cooper will throw his food, scream, knock over a chair all while pushing the table away. And I will cry. Straight up tears will stream down my face and I will feel look I am going to lose my F-ing mind. And Jamie and I will fight over how negative I am and how he has no feelings about anything. It’s like a repetitive cycle.

And I will vow to not give that kid one snack before dinner ever again and think about printing off pictures of food and Cooper-proofing the table/chairs for mealtime. I will lose sleep thinking about it.

And then the next day Cooper will eat his entire meal without a fight. And in a way it is equally frustrating because I will analyze why that meal was different.

There is no logic.

Another hard part is sleeping. There are days when Cooper will go to bed like an angel. We will read a story, brush teeth, snuggle and he will be sleeping in minutes. And then the next night he will scream in his room for an hour, wake up in the middle of the night, sometimes multiple times, and be up before 6 am. No logic. Nothing has changed.

And then I think a lot about his self care. This one breaks my heart and I don’t even like to talk about it. Is he going to be 10 years old and still wearing a diaper and watching Barney? He can’t take off his socks or even put his coat on. The lack of self care ranks pretty damn high on my list of the hardest parts.

But, it’s not the worst. Not even by a long shot.

I have been doing this for 3 years and 11 months and I can say with certainty that I now know what the hardest part is.

It’s his inability to just ‘be in’ a situation.

I want him to sit at dinner with us. Or gather around a friend opening up birthday presents. Or just stand still and observe. Whatever it may be. I want him to ‘be in’ the situation. Not running halfway down the road screaming. I am already dreading the holiday season. Jamie and I get separated because someone has to be with Cooper.

Jamie and I are pretty good at handling it. We really are. But, we are both human and can only handle so much. And we always ultimately turn on each other.

Last weekend we were moving into our new house. The doors to the house were open and 2 friends, plus Jamie, were moving boxes and furniture into the house. Cooper wanted to be part of the situation…I get that…but he doesn’t know how. I think about how Sawyer or another child would watch what was happening. Or play by the people working. Or just be there.

But, to put it simply…he can’t.

Cooper runs. And screams. And the kid is smart because if I step towards him he runs towards the road. He knows that will get a reaction. I spent an hour or so chasing him around the yard and trying to help with the move. Cooper refused to go in the backyard where the fenced in area is. He wanted to be out front where the action is.

At one point I tried to grab him and bring him inside and he did the ‘fall to the ground screaming and rolling around’ tactic. I have no defense against that. I think actual smoke shot out of my ears.

I saw a neighbor looking out their window and us and I could only imagine what she was thinking. And I get embarrassed. It’s the honest truth.

Another example was a few weeks ago we were at a friends house for dinner. They also have 2 kids. We were all standing around a huge swing on a rope in their front yard. Sawyer and their two girls were having so much fun swinging and playing in the leaves. Cooper just can’t ‘be’. He ran toward the road. And I followed. We ended up down by the river and I knew I was stuck there. He refused to leave without a kicking, screaming fight. I could hear everyone else up by the house having fun.

I sat down on a rock and began to get really worked up. I didn’t want to be down there. I wanted to be with our friends and the kids. But, Cooper can’t be up there.

Later, we got him in the house for dinner and he wouldn’t sit at the table with the other kids. Or eat. Or watch the ‘girly’ movies. He went into full on destructive mode. By the time we left I was sweaty and exhausted and vowing to never leave the house again.

It’s not fair. He isolates me and it’s so lonely.

So, to me, that’s the hardest part. I wish he would just sit on my lap and be part of a group.

Sometimes when he is sleeping I will snuggle him in bed and smell his hair and kiss his cheeks and just ‘be’ with him. And I will tell myself that I am thankful that I have a healthy baby boy to snuggle and love. And that the hard parts don’t really matter.

But that’s not true. Because I am human. I care. Too much sometimes.



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