Autism Is Giving Me Nightmares

My son, who is on the autism spectrum, is planning to go to college in less than two years, and I’m all, “OH MY GOD HE’S NEVER GOING TO EAT, MUCH LESS CLEAN HIS ROOM OR GET TO CLASSES ON TIME AND HE’S GOING TO DEFINITELY GET BEATEN UP FOR SOMETHING HE SAYS AND HE’S NOT GOING TO SLEEP AND, AND, AND . . .”

My fears just keep going on and on and on . . . and then on some more. Gracious Gammy Goo!

For the past month, I’ve been waking up crying in the middle of the night about once a week, but I’m happy to report that it hasn’t happened so intensely this week.

My nightmares often end with my son being assaulted. In every dream, he’s said something demeaning to someone, or he can’t stop talking because he’s anxious, and pissed someone off so much that they just punch him in the nose or they play a really hurtful trick on him.

Dear Brain,

STOP IT! STOP IT PRETTY PLEASE WITH A CHERRY ON TOP.

Hopefully yours, Mica

Once I wake up, my mind goes round and round thinking about how confused he would be if he was ever assaulted, and I then obsess about his difficulty processing that if it happened.

So I’m moving through sleep nightmares and waking nightmares when the sun is shining. It’s not all the time of course, but it’s more often than I’d prefer.

Why now?

We recently got Michael tested for processing speed, IQ, reading skills, math skills, and a bunch of other things to make sure we have all of the accommodations he’ll need for college. This was about a month ago, you know, right when the nightmares started.

When I went for the final review and mentioned he would be going away to school, one of the tester’s said, “So you’ll be relocating with him?”

I started crying. And I covered my face with my notepad.

You’ve been here too? I’m guessing you have in some form or another.

I replied through my tears, “No, I’m not going to go with him.”

And she was all, “That’s totally okay. He’ll just need full accommodations wherever he goes.” She shared a few very interesting stories of other autistic kids in college that were helpful, so that was that.

What’s the truth?

The truth is that I don’t know how it will go.

This whole thing isn’t happening for another year and a half. I barely know what’s happening tomorrow much less a year and a half from now, so why all the mental fuss?

You know why all the fuss. Raising an autistic child requires an incredible daily dose of heartstrings, patience, knowledge, sacrifice, and all the other ingredients, just like raising any child. But there is this thing called “people” as it relates specifically to autism and “people” can really make a situation awesome or they can make things really awful.

The dealio is that I’m Michael’s mom, and I’ve been his devoted mom for his entire life. I have automatically insulated his life (our lives) so that he is successful and we are all a cohesive family unit. It is now that I can only begin to imagine just how many accommodations I have created for him without even knowing it.

We’re at yet another crossroads and that’s awesome.

I know about borrowing trouble, and I know I don’t want to do that.

Being at this point means we’re doing life beautifully well, and it’s time for different work and different paths. Please note that I will hold on very tightly to inspiration from Temple Grandin’s mother. Their story is so helpful in this movie!

Here are the coping tricks that might help you too

Coping trick #1: Accept the fear

I’m trying so hard to get out of my fear and get into the mode of hope and support, but I feel (know) that my fear is justified and necessary.

My fear has heightened my need for information. I’m going to learn what I can about colleges that offer the full accommodations he’ll need. I just had a meeting this week about his senior classes and updating his 504 plan. I’m doing what needs to be done to help him, but moreso to help myself.

Fear helps move us forward so we can alleviate the root cause of the scaredy-catness.

Dear Brain,

Thanks for the fear and helping me take action to alleviate my concerns and shift from fear to excitement for my beautiful son that I love so much. You’re rad awesome.

Love, Mica

Michael has been a “high-needs” kid from the day he was born. He will need continued accommodations throughout his life, though they will look different as he gets older. We’re going to do for him whatever it takes. We always do. Why would now be different?

Really, he’s one ridiculously lucky kid with two parents who love him and complement each other really well. We will take care of him and give him everything we can so that he is set up for success.

If he doesn’t “succeed” (insert whatever your definition of success might be), we’ll just make a new plan and carry forth.

Coping tip #2: Where are you right now?

Before I go to bed, I sit down to look around and know that I’m in my sweet and safe home. When I go to bed, my kids are right down the hall in their rooms, snug in their beds, and usually, we each have one cat purring us to sleep. It’s perfection really.

I say to myself, either in my head or actually out loud if I’m really feeling fearful, “In this moment we’re all safe and snug and right here in this house. That’s all I need to know.”

And truly, that’s all I need to remember before I go to sleep because if something happens, we’ll deal with it. We always do.

Coping tip #3: Nightmares happen – bedside supplies

Speaking to myself before bed has worked wonders for many full nights of sleep, but I have still woken up with nightmares.

When I wake up and know that if I go right back to sleep the scenario will just get worse (learned this one the hard way), I force myself awake, which I realllllllly don’t like to do. I get up and intentionally turn the light on. Then I journal. Keeping a journal and pen next to your bedside can be super helpful.

I write about what happened in the dream. I cry as needed while remembering the dream and then I find that writing affirmations like I’ve listed above really helps me shut off the fear at that moment so I can get back to sleep.

It often looks something like this scrawled in sleepy bedtime cursive:

“In this moment, he’s peacefully sleeping in the next room and he’s still in high school and there is so much time between now and then and I will do what I can to help him prepare and be successful and he’s so awesome and he wants to succeed and I will help him with everything I’ve got.”

Another idea is to journal those affirmations before I go to bed and write comforting, loving things to myself.

• My son is just fine in this moment.
• He’s not been punched in the nose and probably won’t be tomorrow or ever because he’s never been hit like that before. Neither have I come to think of it. TV and movies are very impactful. Heat had so many guns and gunshots. I have ADD and I don’t want to think about gunshots either before bed, so now I’ll think about my cow paintings and how cute they are. One is named Happy, and Mason named another one Khaki and that’s weird.
• Whatever happens, we will handle it the best way that we can.
• I’m so lucky to have Michael and Mason as my children. Yay!

I remind myself that there are millions of kind people in the world. Truly there are.

I know that I’ll do my best to make sure he’s connected with people who know what his challenges are. I tell myself that even getting punched in the nose sometimes can be an excellent lesson in life. I don’t ever convince myself of this one, but there is truth in there.

Coping tip #4: Share what you can

Here’s the thing that can be controversial about my parenting style, but I almost always share my full truth with my children.

They know where I’m coming from in almost every situation, and that is something I stand behind with every cell in my body. I share my fear with my children in little bits of conversation.

I share age-appropriate truths that make it clear what I’m thinking about and why I might be feeling big emotions.

The other day I woke up after not sleeping well, and one of them asked if I had had another college nightmare.

I felt guilty, but the truth was that yes, I had had a really difficult dream. So I said, “Sadly, yes.” And we all moved on knowing that I love my two kids more than anything and never want them hurt. They know that I take my feelings to bed and that I write this blog and this week I will talk about how to cope with autism nightmares.

Coping tip #5: Distraction, distraction, distraction

When the journaling doesn’t do much, which sometimes it doesn’t, I then go back to the parenting tactic of raising toddlers . . . distraction.

I always distracted my young kids when they saw something shiny that we weren’t going to get or take time for and I would do the whole, “Whoa! Look over there at that other very cool thing!” while quickly walking (running) away from the shiny thing. Or I’d put something in their hands to fidget with . . . or put a snack in front of them.

That strategy worked well much of the time, so I’m trying it now for myself with a bit of success.

It might go something like this: 

Hey Brain,

Ooooh, fun, We get to redo our front garden bed this year because we’re finally ready to remove that big gnarly bush that’s needed to be taken out for over two years now. Won’t that be exciting? What kind of plants and flowers do you think would be nice out front? We’ll have to see how tall each plant is supposed to grow so we make sure the heights work well. We’ll budget for fertilizer, mulch, and some new plants and that will be super funzies. Let’s keep thinking about plants while we go back to sleep.

You’re awesome and not being tricked at all right now. We just need restful sleep.

Love, Mica

And that’s one more way I have been helping myself get back to sleep without reliving the nightmares again of my son being harmed while I’m not able to protect him with large quantities of bubble wrap and my flowing mommy cape.

Coping tip #6: Put it into perspective

Lastly, I’ve found it helpful for myself to justify my fears.

I asked myself if I’m crazy to be worrying about this. So the next question becomes, “How would I be reacting if my younger son was going to go to college tomorrow?”

With that question, I always end up smiling because my very first thought is about how much food I’d need to buy him for the trip, and then my next priority would be to make sure he has good food and a kitchen wherever he ended up.

I’d buy him all the essential kitchen supplies for wherever he would be going, and I’d help him get his clothes packed, and I’d tell him he has to answer the phone at least two times a week when I call him. At fourteen (Happy Birthday to him this month!), he seems like he’d be able to maneuver any college arena with style, grace, and ease . . . even next month. That’s just who he is. Michael is who Michael is, you are who you are, your friends and children are who they are, and this is just who I am.

I’m a devoted, loving, scared, hopeful, and supportive mama. And I hope these tips help you with your parenting and life journey.

We’re hopefully doing our very best in each moment.

With love and restful nights,

Mica