Autism is Messy – The Cost of Independence

In these two photos, the photo on the left is a photo of the chair cushion where our autistic kid sits for his meals. The picture doesn’t come remotely close to showing the extent of the abuse this chair has taken. To give you a comparison, the photo on the right is another chair at the same table where others in the family sit.

Yes. The two chairs are from the same set. And yes. The damage is clearly permanent.

Our boy is thankfully a pretty good eater (praise God for patient therapists), but like many others on the spectrum he never sits still. Never ever, including at meals. He’s also good at self-feeding when he’s hungry, although he still mostly feeds with his hands.

So, obviously the combination of constant (often wild) motions with food create miniature food tornadoes at every meal. Chicken nuggets end up squeezed into micro bits that fall onto the chair and then are ground into the fabric by the constant rocking and jumping and bouncing.

A lot of the food does make it into his mouth, but what doesn’t inevitably goes the way of a lidless blender onto the chair and the floor.

If he were a toddler, this wouldn’t be as big of a mess to clean up. But he’s not a toddler, he’s a very strong active boy.

So, why didn’t we protect the chair? Good question.

The thought never came up back when something could have been done as a measure of protection (back before the official diagnosis of ASD). And with the frenzied and chaotic life of autism, often the cleanup of the dinner table is hours or yes sometimes even days after the damage is soaked in and dried.

The thing is, this chair doesn’t bother us in the slightest. We look at it as a small price to pay for his independence.

Yes, we’re working on sitting still, but even if we get three good minutes of still, it takes much longer than that to eat.

Yes, we’re working on spoon feeding, but spoons full of food in his flailing hands might actually make the food tornado wider in the short run.

Our boy also doesn’t seem to get as much in his belly when he’s spoon fed by us as he does when he feeds himself. And while we don’t know what’s going on in his thoughts, we have to assume that any sensation of independence and big-boyness has got to be good for him.

So, we choose to celebrate with him.

Another part of the messiness is the price we’ve paid in our clothing. We all expect infants to mess up our clothing with their spitting up and their diaper mishaps, but when we’ve raised children without ASD we know there’s kind of a turning point when we no longer have to change our clothes several times a day. Not so much in autism.

We simply never know when we can expect hands grasping at us that are covered in coffee grounds from the trash can. Or toothpaste from the bathroom we forgot to lock. Or butter from the fridge. Or ink from the marker we forgot to secure. Or poo from the pullup because our big boy is nowhere near potty training yet.

So, we’re more intentional about the clothes we wear around the house. The second we get home from work, the work clothes get put away and we change into something comfortable that probably already has permanent staining from some biological source long set in.

The thing is, these stains mean that our boy has contact with us.

We are incredibly blessed that he can demonstrate affection in his wild way. He is forever touching us with greasy hands, touching our clothes while holding his dinner, grasping onto us with snot covered fingers to pick him up (although this is becoming much harder as he gets so big). We look at the stains on our clothes as an incredibly small price to pay for his unbridled affection.

We know that this boy loves us, and we would rather risk ruining our clothes than try to shield ourselves from his touch simply because we might get messy.

I am thankful that our home isn’t full of people who were raised in sterility, because I’m not sure how we would be handling this life. And if someone is reading this feeling disgusted by the concept of living in the messes we’ve described, I hope I haven’t offended.

No, my house isn’t a health hazard. Yes, we have people over to visit. Yes, I sweep and mop and wipe and disinfect. Yes, we have dozens of tubs of baby wipes all over the house to try to contain messes when they happen.

But the reality is, unless we follow our kid around every single second of every single day (which would make every one of us miserable), messes get made.

Big messes.

But what also gets made in our home are memories we cherish.

Memories of enjoyment. Affection. Acceptance. Independence.

We would rather wear stained clothing and overlook a ruined chair than waste the precious time we have with him by stressing out about what it all looks like. Is what we’re doing perfect? I don’t really know.

We do the best we can and we let the rest go.

In our house, yes it looks messy. But it looks like love to us.

 

Written by, An Anonymous Mother

‘Being totally transparent here, I’m sending this anonymously because I don’t want to bring any shame or undue attention upon my family. Some people (perhaps even my own friends) are going to read this and be disgusted. I expect that just as many people will read this and be relieved that it isn’t just in their home. My purpose for sharing this is not to get any kind of accolades for what we endure; you can’t very well receive accolades anonymously. My purpose is to hopefully give others in the same situation permission to let the blessings and accomplishments outweigh any shame or self-judgement that comes from some of the unavoidable repercussions of autism.’

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  • TRISTA J CABRERA

    October 4, 2018 at 1:49 pm
    Reply

    There is nothing to find disgusting here. I think that if anyone does find it to be so, the disgusting thing is their attitude. You […] Read MoreThere is nothing to find disgusting here. I think that if anyone does find it to be so, the disgusting thing is their attitude. You sound like an amazing PARENT! We had to learn very quickly that keeping things in 100% order or pristine condition was putting a lot of unneeded stress on our family. Now we do our best but try to just enjoy our daughter! We do avoid other family members homes a lot because of the fact that visiting and trying to keep up with the mess is simply too much. Thank you for sharing this story and helping other families to see their not so different and also letting some families see just another aspect of how different our lives can be from theirs. Read Less

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Finding Cooper's Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you're never alone in the struggles you face. And once you find your people, your allies, your village....all the challenges and struggles will seem just a little bit easier. Welcome to my page!

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