You scream, I Scream (on the inside)We all just SCREAM!

screamingSee this picture here. This is our life, a roller coaster, but our kids are not screaming because they think it’s all fun and games and neither are we.

I’ve seen a lot of post lately, from new parents and parents whose children are entering a screaming phase. Some scream all night, some in the day, some when your attention is divided, some in a new pain you can’t find, and you’ll swear some just scream for the want of screaming. To put it bluntly the screaming can nearly drive you out of your mind- you’ll cry, you’ll be sleep deprived, you’re on edge every second waiting for the next scream, you’ll want to scream, omg you just want some SLEEP! Every bit normal.

Now, Katie rarely screams like that anymore, but from 1.5-11 or so she did, she screaming for hours, and back then the docs would say…aw, it’s just Rett’s, you’ll have to deal with it. Thank  goodness times have changed. But, why do our children scream so much.

Here’s a great blog post about screaming during regression from Grace for Rett. It comes with some great tips, too. But regression is not the only time screaming will occur. With little if any verbal communication possible, screaming becomes communication.

I know Katie will scream if she’s bored, or if she’s hungry, frustrated, mad- but getting to the root of the problem is often difficult especially with the “mad”. Why is she mad?? What happened in her environment that changed and she didn’t like. What phrase or word was said? It is always such a struggle trying to figure out the emotional reasons why. And, how do you deal with it?? Every parent can read their child, for the most part, they can see it coming, and speaking on a personal level, I can tell when she’s on her way to full velocity and my stress gets higher and higher the closer it gets and I get a bit desperate to figure out what’s going on before things start flying.

I deal with different reasons different ways…if it’s clear she’s bored, and I can, we go out, anywhere, even if it’s just a drive listening to music. If she’s beyond mad, I try and talk to her… why are you mad? Is there a way I can help you? I want to help you, but I can’t help you when you are so loud. You need to “talk” to me in a quiet voice. And I commiserate. I don’t always know what I’m commiserating about, but it shows I’m listening. I’ve found that the key is to keep my voice very calm despite my stress level to demonstrate to her that she can calm down. If she’s frustrated, I try to redirect to something she can accomplish or ask if I can help. One of her quirks is when she gets super frustrated her shoes and socks just MUST come off, and just by helping her do that goes a long way in calming her down.

But, what if it’s pain? Hearing her say “owie” and crying is my worst fear. There’s a physical reason for her crying. Then begins a whole session of palpating on the abdomen, rotating and manipulating limbs, checking for appendicitis over and over again, and I have medical training. I can’t imagine those parents who have to figure it out on their own. Is there a new bruise? Did something happen out of my sight, at school, with the aide? What did I feed her? When was her last bowel movement. Our minds just go flying out the window. And when no culprit is found, off to the ER, most often to be told there’s nothing they can find.

And, yes, there are times we never figure it out, though we reach out to other parents…has this happened to your daughter/son? And we all try our best, searching our own databases of minds to remember what it was one time or another that caused it.

But, screaming is part of the Rett experience for many. And those parents need help. If it’s screaming at night, you NEED your sleep, your family NEEDS sleep. Talk to the doctor about options, they’re out there. If it’s after eating, no matter how young, check for reflux and gallbladder issues-notorious in young Rett children.

The main thing to remember is-YOU ARE NOT ALONE, you aren’t doing anything wrong, your child is not the only child doing this, and if you reach out you will get many, many responses from parents going through or who have gone through the very same thing.

Another thing to remember is that children deemed “high functioning” or “less affected” tend to have more of  these behaviors, including aggression. This is commonly known, so don’t be afraid to talk to the doctors about it. You don’t have to suffer in silence. Your child doesn’t hate you if they beat you, bite you, pull your hair etc. Common knowledge tells us that children will often take out there fears and frustrations on the ones they love the most because they trust them the most and they have no other way to ask for help.

When Katie was growing up, doctors were loathe to prescribe medication to address this behavior and our whole family suffered. Many parents, like me, wear the scars because of it. I have bite marks, scratch marks, and unfortunately she didn’t just rip out the gray hairs. But now, with a medicine regimen that helps her sleep and contain her behaviors for the most part, she can focus, she can (usually) use coping skills to calm down and I rarely have to administer meds to break her from a screaming fit. One important weapon in my arsenal is her anti-acid-when she screams for a long period, this causes reflux, which then becomes the reason she keeps screaming, so a dose of that helps a great deal in difficult moments. When she’s not in pain we can work together to solve the initial problem.

Parents and caregivers know when something isn’t right, but there can come the time when medicinal intervention is needed just so you can distinguish frustration screaming from pain screaming. Rett is never an easy road, just remember you don’t have to travel every or any part alone. Reach out and you’ll find there are others on the same one.

And one thing I do, after a difficult morning and I finally get Katie to school is treat myself to an ice cream cone. So, don’t forget to treat yourself after a hard time, you deserve it.




This entry was posted in anxiety in Rett syndrome, Communication, Rett Syndrome, screaming in rett syndrome, Trail to a Texas Trial, Uncategorized and tagged , , , , , . Bookmark the permalink.

2 Responses to You scream, I Scream (on the inside)We all just SCREAM!

  1. Rose and Renée says:

    As always, we’ll put.
    I reward myself with ice cream every night

  2. melelllan says:

    lol, I grab a cone from McDonalds. If I tried at night, Katie would eat it ; )

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