The Ugly Side of Autism

IMG_3497There are sides of autism that people don’t talk about. Just like there are sides to everything that people don’t talk about. Like if someone would have told me what really happens after you give birth. You can’t poop. Your nipples actually bleed. You cry…a lot. You will fight with your spouse. Acne, sweating, hair loss, etc.

If someone would have sat me down and said…you might get really, really sad. You might hold this baby and love them and be afraid of them at the same time. You will be so sleep deprived that you won’t know what to do with yourself. And you will look at your body and cry. You won’t even recognize yourself. And everyone around you expects you to be overjoyed. Overwhelming is an understatement.

But there is so much joy too. The joy outweighs the hard stuff. That’s the balance of life. And it gets better.

There is really hard side to autism too. And most people don’t talk about it. They choose not to. It can be scary and dark and it doesn’t fit into the pro autism movement out there.

There can be biting. Or violence. Or self-injurious behaviors. I’ve had moms email me about not being able to handle their teenage autistic children. And I don’t know what to say. My heart is broken for them. They feel like failures. And they are most definitely not but they feel that way. And I would too.

These babies are going to grow up. Cooper is going to be five. He weighs over 50 pounds. With age comes more advanced emotions and needs. Managing him is only going to get more challenging.

You look at this kid and you think….he is so beautiful. And he brings so much joy to everyone around him. Not a day goes by where I don’t get an email from a teacher or an aide or even a stranger where they tell me how Cooper and I have changed their lives. He gives hope and strength to so many people.

But that is the daytime. And that is the good stuff. That is the joy. That is the easy part.

What about the dark parts. The parts that no one talks about.

Changing an almost five year olds diaper. Digging poop out of his butt. Giving him an enema in the bathtub and watching him hold it in still. It’s heartbreaking.

The constant constipation. When Cooper is in pain he is like a caged animal. This is human nature. But god it’s hard.

The head butting. Cooper can throw a head with the best of him. Everyone in our family has been victim to a Cooper head butt. Fat lips and black eyes are all too common.

Watching him hit his head with his hand or worse…on the floor or a wall. Watching him scream and demand and not understand why.

Watching him hit his brother or other kids.

Begging and pleading with him to eat…anything. Eat any food.

Watching him throw and break stuff. Trying to get him dressed. Taking a swift kick to the stomach day after day.

The struggle to learn. The lack of desire to do anything.

Watching him move constantly…at all times. Constant fidgeting. Constant. He can’t shut his body off.

The isolation. I didn’t take Cooper anywhere besides therapy for 2 years. I couldn’t.

You watch other babies grow and become people. They pick up on skills and adapt to the world. And we stay the same. And celebrate the use of a fork and pray for the use of a cup and not just his sippy cup.

This is the ugly side of autism that no one talks about. We preach about autism awareness and acceptance. About kids lining stuff up and being super genius. You think Rain Man.

Well, my kids not a genius. He doesn’t have a special skill. And he doesn’t have an insane talent. And he can’t talk.

That’s my autism. I dug poop out of Cooper’s butt last night. And he lost his ‘using the toilet’ skill. Just like that…it’s gone. No more peeing on the potty. And, he wakes up every single morning before 4 am. So that’s what I’m dealing with.

I’m not perfect. This morning Cooper did something disgusting. Yes, it could be called a childlike behavior but when you stack behaviors on behaviors it can easily continue to happen.

I took off his diaper this morning and he got mad at me. I didn’t know why…nor did I take the time to figure it out. I scolded him and said something like…’Come on buddy. Mommy’s tired. Just take your diaper off.

He melted down. Like a true, all out meltdown involving kicking and screaming. And before I could react he pulled poop out of his butt and smeared it on me.

At 6 am. Before work. On a Friday.

I yelled. Loudly. And I scared him. I told him that he is almost five and autism or not we DO NOT smear our poop on mommy. Never. It will not happen. Not today and not ever. It was loud and involved a squeeze of the arm. And it was ugly. And it scared him badly. I was most definitely not mom of the year.

This is the ugly side of autism. The behaviors that turn me into a crazy person. Like when he strips down his bed every day. Strips off the sheets and the blankets. Or when he piles every single item from Sawyers room into his crib. Every book, piece of clothing, toy, diaper, etc goes into the crib. Sigh.

Or thows stuff in the toilet. Makeup brushes, combs, hair ties. You name it. He’s thrown it in.

In public I have my shit together. I can do it. I have perfected the smile and the giggle that is needed to survive.

But, it is very different in the middle of the night, when I am so tired, and so unbelievably worn down and the ugly side of autism rears its head.

Mom of the year quickly turns into “Remember you love this kid and it WILL get better” mom.

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23 thoughts on “The Ugly Side of Autism

  1. We’ve all been there, in slightly different versions but all feel that torment, sadness, shame and depression. Hold in there, if you can.

  2. Pingback: Friday Favorites #9 | Three's a Herd

  3. So sorry to hear this. Have you tried Movicol for constipation? The European name is Movicol; in the US I think it is called Miralax. It’s a powder you mix into water, and you can add juice for flavour. I don’t know if it might help. It has helped my son immensely with his constipation.

  4. Oh, no, building up an immunity… that sucks. Yes, I know what you mean, I don’t like giving it either but it’s the only way we’ve been able to get through the last three years. All best. And thanks for your blog; it helps others a lot.

  5. Hi love,
    Big hugs. We have our version of the ugly side too. It sux and my heart goes to you.
    Just a few things that have helped Pipers constipation. Pure Magnesium in liquid form added to juice softens stool and you can’t overdose it. It’s way better than fibre. Also cutting yogurt made a HUGE difference. Not milk or cheese just yoghurt. I know elimination diets are hell but figuring this out changed our lives. So so much bad behaviour is caused by sore tummies as you know.
    Thanks for the honest post, lots of Autism families will relate. Xx

  6. Have you heard of Soiling Solutions? It’s some program that is supposed to really work well for children who hold poop. I haven’t tried it on my son yet but am seriously considering it despite the cost. http://www.encopresis.com

    I think you are a wonderful mom. Just think that needs to be stated X 5 million. 🙂

  7. First off…. You are a great Mom. You need it hear it and cling to it *hugs*

    I call it the “dark side”….. I have a friend who always likes to remind me that parentng is not for the weak…. And parenting a child with Autism you need everything you got plus superpowers! This is coming from a lady with 4 boys and the last is Autistic:). My boy used to take me for a walk on the dark side a lot when he was 2,3, and a somewhat when he was 4. Now its a stroll on frustration street and he’s the driver;). I really appreciate your honesty sharing exactly how it is day by day and how you feel. It is sooooo not easy and can really suck at times. I confess I am one of the Autism parents who doesn’t write about it. Why? I am hoping he will read it one day. On a day when hes struggling and frustrated…. He can look back and remember…. I made it through and i can again. Hugs….

      • Oh no!!! Sleep deprivation is the worst!!! OMG the wake ups. My boy used to do that a lot….3 times a night and I was a train wreck. We used to use melatonin prescribed by the dr for a while. He’s 8 but I’d say up until Grade 1 it was hard!!! Take care of yourself….lack of sleep our patience goes out the window. Now if only I could teach my cat to sleep!!!

      • Oh I forgot to add…the Glowclock from England was our life saviour. It was blue big star for sleeping and it turned into a star for wake up time. We also made a social story for bedtime that we showed him every night for 3 years…every single night. Relentless to him as he was to us. It took forever but it finally stuck

  8. This is probably a ridiculous question, but have you ever had Cooper thoroughly checked for posterior tongue tie and upper lip tie? Because it looks to me, from this picture of him crying, like he could have both.

    I’m not implying for one minute that (if he has ties like these) this is why he has issues with his speech, but it can sometimes cause lots of trouble in the stomach and beyond. Just a thought.

    • Hi there. I am not sure i guess. Just a typical pediatrician and speech therapists. Would they say anything? Not a ridiculous question at all. He REALLY struggled to nurse and i always chalked it up to low muscle tone. That could explain some of it to though. Who could i ask to look? Do you know?

      • A lactation consultant picked up on Levi’s tongue tie. A speech therapist or Peadiatritan should know too. Look up on google and you can see what they look like. My baby’s one was posterior meaning the tie only came about halfway up the tongue. Can he poke his tongue out and lick?

  9. Well … first off I should probably explain a little about my experience. I have a 15.5 month old who struggled horribly also with nursing – choked and spluttered her way through letdown, suffered with silent reflux, and had her first nursing strike at just 9 weeks old. We went on to have five more strikes before she hit 4 months, lasting up to two weeks at a time. I was only able to feed my daughter while she was asleep.

    At her first health check when she was about three days old (I think) they did their routine tongue tie check and found nothing. After the strikes started, I saw two professionals, including a paediatrician, who stated hat her tongue looked absolutely normal. But I knew it wasn’t.

    The more I researched, the more I knew she absolutely had a posterior tie. The problem with them is that they are right at the back and often covered by the mucous membrane – thus, they are basically invisible. But they can be felt, or revealed with the use of fingers or a tool by someone who knows what to look for.

    My daughter’s tongue ‘spooned’ when she cried – the edges rose up and the middle pulled down, just like Cooper’s does. He also has a fair gap between his two front teeth – you should be able to easily see if the frenum under his top lip has caused this, as it will join somewhere between the teeth. As I understand it, in the vast majority of cases, when there is a lip tie, there is a tongue tie as well.

    In the end, when our baby was four months old, we took her to see a lactation consultant who specialised in all types of tongue tie. She confirmed it straight away and cut it for us two weeks later. We had one tiny strike after that, but since six months we have nursed normally and still nurse today.

    I’m in the UK (can’t remember how I found your blog, but have been a stalker for a while!) so can’t give you any definite places to go, but a good lactation consultant with knowledge of posterior ties would know, if Cooper would let her have a look/feel in his mouth. I’m not sure where you are in America, but there is a Lawrence Kotlow practising in Albany, who is the absolute king when it comes to tongue tie, and trained the lactation consultant we saw. I understand America is a VERY big place though!

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