Do you believe in foreshadowing?
Or some weird twisted version of karma?
When I was 20 I nannied for a 3 year old boy. The family was very wealthy and very, very bizarre. The little boy was strange to say the least. He was very cute but he had violent undertones. And he did really bizarre things. It was a long summer. Looking back I can now safely say that he was autistic. I just didn’t know it. And his parents refused to see it. The would put me in really awkward situations that I know now shouldn’t happen with an autistic child.
Anyway, he held his poop. I didn’t even know holding your poop was a thing. He held it for attention…which he clearly did not get from his parents. At one point he held his poop so badly it forced his intestines up into his lungs. And he struggled to breathe. We would spend hours in the bathroom working on pooping. His reward…1 jelly bean. So odd.
As you can imagine, this was a lot for a 20 year old girl. The summer ended and I literally ran away. Like literally. I never contacted that family again.
So when Cooper started having constipation problems I knew I was in for trouble. I knew what holding poop looked like. And how painful it can be for a child.
I took a few videos of Cooper last night in the tub. He was having a severe bout of constipation. I took these videos because there has to be other kiddos out there that are struggling like this. And parents who can’t get help for it.
I can’t even put into words the feeling of helplessness that I felt.
I don’t believe Miralax is the answer to this problem.
I know I am always talking about what autism looks like. Well, here is the real deal. This is what autism looks like to me. Let me rephrase that. This is what nonverbal, apraxic, sensory processing disorder, autism looks like to me.
These are the moments that crush moms and dads. I couldn’t even function after this hour was over. Hell, I’m still thinking about it. These are the moments that scare kids. And confuse everyone. And leave you so lost and exhausted you don’t know where to turn. These are the moments so stressful that you don’t know if your marriage or family will survive. You feel like you are failing.
And you don’t know what the F to do. You are the mom but you don’t even know how to help your baby. Talk about being paralyzed by fear.
Doctors don’t see these moments. People and family don’t see these moments. This is the real deal.
You want to know why I cry all of the time. And I spend nights awake worrying about the future. It’s this. This exact moment.
Cooper holds his poop. There is no fancy way of saying that. He holds it. He holds is so badly that even a daily dose of a laxative like Miralax won’t work. His poop eventually turns to stone. It gets so hard that I can’t break it with my fingers. That’s gross. I know that. But I am his mom. And that’s what mom’s do.
This is a video of my child begging for help.
And begging for an enema. A nonverbal, autistic 5 year old, begging for an enema. He shouldn’t even know what an enema is.
What you don’t see in this video is me holding his body in the fetal position for over an hour. I sat hunched over the bathtub forcing his legs up to his chest so he couldn’t hold is legs stiff as a board and clench his butt.
You also don’t see him beating his head with a clenched fist in pain.
And you don’t see me fighting with his dad over whose fault this was. Even though it was no ones fault.
And you don’t see a 2 year old brother crying next to the bathtub because his brother is in pain.
You see Cooper crying. I talked him through this for over an hour. At moments he even started to fall asleep. My arms got to the point where they turned to jello.
I watched his butt tear and bleed. Yup. I just had to keep holding him. Waiting for him to finally give in and go.
This is what autism looks like to me.
This is the side you won’t see on a television special. And you probably won’t read about in a book. AND, if you ever have to describe it to someone…they won’t believe you.
This is autism.
Cooper passed out immediately after he finally went to the bathroom. I spent the rest of the evening thinking about doing this for the next 5 years. Or 10 years. Is this my future? I just can’t imagine.
The fear is real my friends.
So, if you have any helpful ideas feel free to send them my way. We’ve tried SO MANY things…ranging from removing dairy, to removing gluten, probiotics, vitamins, chiropractors, etc. There has to be something else we can try though. Thoughts?