Thursday, December 22, 2011

Weird thoughts and nightmares

Something new has cropped up with Monkey over the past few weeks: nightmares. My husband and I have tried to figure out what prompted it, but we are at a loss as to when and why it all began, and how we can best help him through his fears.

An example of one of those evenings goes a little something like this:
After the kids have been put to bed and hubby and I are enjoying a quiet house with our feet up in the family room, a stealthy figure will appear in the darkness. It’s Monkey. He’s climbed out of bed and slipped down the hall to stand there looking at Titan until he is noticed. It always catches my husband off-guard, seeing a ghostly figure eerily staring at him in the shadowy darkness. When we finally see him and Monkey begins walking toward us, now without hesitation, I can already see the look of sadness on his face. I may even see the tears beginning to fall as he enters the room.
Of course, I immediately open up my arms to beckon him toward me and I say, “Honey, what’s wrong?” His response is always the same as he begins to openly cry and quickly crawls into my lap for an embrace. “I don’t know.”
Me: “Why are you sad?”
Monkey: “I don’t know.”
The crying continues while I hug him and stroke his head, and Titan and I look at each other for unspoken ideas of what to do next.
At some point while I calmly talk with him I am able to get him to reveal a snippet of his nightmare. Initially, that’s what we thought was going on. But instead of a true nightmare, we’ve discovered that he is having some sort of bad images and thoughts come into his mind as he closes his eyes to fall asleep. Thus, it makes him scared to close his eyes for even a few seconds, fearing that he’ll see those things.
Falling asleep has become a huge source of anxiety and he is unable to fully express what’s happening. Titan and I fumble along, trying to help him as best as we can without having all of the information. The saving grace is that these occurrences do not happen every night. But when they do, they are fairly upsetting and traumatic for Monkey.  
We have rephrased his experience as having “weird thoughts” or “yucky thoughts.” Our hope is that by convincing him that thoughts are easier to control than dreams, it will help alleviate some of his anxiety. Eventually, I hope the idea sinks in that he can change his weird thoughts to good thoughts.
So, we sit and rock in my chair, cuddling while I talk softly and help him stop crying. We talk about the particular yucky thought he had that night and how unlikely it is to actually happen in real life. I remind him that his bed is a safe place up high in his loft with railings all around, with a thick and cozy blanket, and a pile of stuffed animals to protect him. We talk about many things and I reassure him that he is safe and doesn’t need to worry or have weird thoughts.
In order to help him through his fear, I have come up with a plan for him. As with most children on the spectrum, having a plan in concrete steps is much easier to manage and internalize. Some of the options I have given him for his plan include his favorite activities and play to his strengths so that they are easy for him to remember and try.
They include:
1.       Counting numbers in your head
2.       Think of your top 5 favorite cars you saw in Motor Trend magazine and imagine what it would be like to sit inside each of the cars
3.       Think of words in Spanish
4.       Do math problems
5.       Think of a Christmas song and sing it in your head or hum it softly
6.       Lay on your pillow pet and feel the soft fur with your fingers
7.       Turn on your radio’s sleep timer and listen to music
8.       Hug your stuffed teddy bear and tuck him under your chin
9.       Pray for Jesus to help you have happy thoughts and take away the weird thoughts
10.   Think about all the fun stuff you want to do tomorrow and make a schedule in your mind
11.   Get mom and dad if your plan isn’t working
I certainly don’t ask him to remember all of these things, but we focus on maybe 4 things he can try. The last option is always “get mom and dad.” Whatever items we select for the plan that night are then practiced in order. I have him repeat the list several times before he goes back into his room so that he knows the plan without hesitation.
Since he is so fearful of shutting his eyes, we practice things incrementally. My initial focus is to get him to stop crying. Then I have him choose the first item from his list to try while he practices shutting his eyes for one minute. I rub his forehead and eyebrows (a very calming thing for him) and gently place my fingers on his eyelids. When he can get through one minute with his eyes closed, we try for 2, then 3, adding in additional items from his plan if they are needed.
At that point, we walk back to his room. As he climbs into bed the tears usually start back up again. I turn on his reading lamp (or the Christmas lights he currently has hung up in his room for the holidays) and we talk through his plan again. I have him tell me what his 4 steps are in case he has weird thoughts. I reassure him one more time about his safety and I pray for him before leaving the room.
If things are particularly bad that night, I ask Monkey if he would like a “nighttime vitamin” (melatonin). He usually says yes because he’s tired and is too afraid to fall asleep on his own. Melatonin typically takes effect about 30 minutes after he’s taken it. Just so you know, we don’t give melatonin every night, saving it only for when the boys need it. I hope that neither of them will ever have a long-term reliance on it in order to fall asleep. About 2 years ago, we used melatonin and other supplements prescribed by our naturopathic physician. Her assistance helped us get through some fairly difficult times with the boys’ sleep habits. They are much better now and no longer need such interventions every night, which we are very thankful for.    
After Monkey is settled in his bed (even though the tears may still be falling), I agree to check on him every 5 to 10 minutes. After checking on him once or twice, I ask him if he needs me one more time or if he is okay to go without. I want him to be able to learn how to calm himself, so I feel that it’s important for me to limit my interaction with him after he’s back in bed. I try to only come back into his room a maximum of 3 times, with the hope that he will eventually no longer need me to check on him as he gets used to his working his plan and learning how to relieve his anxiety.   
I really have no idea what is causing Monkey’s weird thoughts and their true extent. I don't think I know the whole story, probably because he is afraid to talk about it because it scares him. Knowing that his brain is quite different from mine, I can only imagine how he perceives imagination versus reality. Both of my boys struggle with the concept of reality, so it’s quite possible that whatever weird thoughts Monkey has are very difficult to cope with due to the difference in his perception and processing of the information.
The hardest part is that I am not sure how to help him beyond what I’ve already described to you here. Monkey tells me that he goes through his plan but that he constantly has the weird thoughts when he closes his eyes. He seems to be having great difficulty focusing on other things in order to distract himself from the bad stuff. I don’t really know how to help him. This is where I could really use your comments! I just want to help my son not be fearful as he falls asleep, and I feel like I might be missing something obvious that could help him.
Do you have a wonderful idea I should try next time?


Anonymous said...

I feel for you and Monkey. It sounds like a form of ocd. I'm still learning about it myself for our 14yr old son (hfasd) and have been reading up on it a lot. The main thing I have learned is with ocd the most effective treatment is cognitive behavior techniques ans sometimes medication. My son had to start taking Paxil and is seeing a therapist. Both have helped a lot. It really sounds like you have a great plan in place but if you havent already, maybe looking into ocd behaviors might give you some more help.Good luck. Hugs!

Caffeinated Autism Mom said...

Anonymous, do you have any books in particular you would recommend on the topic?

Anonymous said...

With my son, and he's much younger (2.5), it's often times a movie/show he watched before bedtime. I've realized that if he sees a confrontation, or doesn't get to see the happy ending, or something was scary before bed, he often times has trouble sleeping, and often times night terrors. I can't ask him yet what's wrong because of his speech delays, but I can say that once I became aware of the correlation and made sure he didn't view anything that would stress him out, it really helped. (And I'm talking about G rated movies like Beauty and the Beast here). Have you tried a sound machine for him? My son can't sleep without his. It has several different sounds and it may give him something to focus on! Good luck!! Ally Cogburb

justanotherpieceofthepuzzle said...

First I want to say that I found your blog through Flappiness is... and I am now following you here and on Facebook.

My name is Kari and I do not have a child with Autism, but I have a bachelor's degree in Psychology and I am an Aide to 4 children with Autism in a local middle school. Autism is my passion.

By reading your blogs and others like it, I am learning leaps and bounds about these kids and it is completely amazing.

Now on to this post. My first inclination was WOW she is doing all the right things!! My second inclination is to agree with Anonymous. It very well could be OCD. You see, I have some very similar problems sleeping and I am not Autistic! I have also received the diagnosis of OCD and I used to take medication specifically for it, but now I take Paxil and a sleep aid.

My point is, I really think you are doing what is right for Monkey! I think that you are taking extra steps to help him through these OCD traits. CBT is kind of what you are doing by giving him the tools to work through the scary thoughts.

I am not sure that traditional CBT therapies would work with a child with Autism, so your plan is good. It will take time... as these scary thoughts didn't happen all at once.

You are a great mother and your children are so lucky to have you!

Thanks for letting me ramble!

Lizbeth said...

That is the worst feeling to have the kids wake up at night. And to have all the angst that goes with Autism. I can see the anxiety kick are doing everything right and so well. Hang in there. Maybe all the stress of the holidays has kicked things into high gear?

Anonymous said...

Hi again. The two ocd books I have are "What to Do When Your Brain Gets Stuck by Dawn Huebner and Take Control of OCD by Bonnie Zucker. Both have been very helpful for my family. Both can be found on for around $12 to $15 or so. I've also done a lot of web-surfing for information. There's a couple of website dedicated just to people with ocd but I found most of them delt with older people.
I really hope this helps. Good luck and Happy Holidays!

Caffeinated Autism Mom said...

Thanks to all of you for leaving comments! There were some nice comments on Facebook, too. I have a feeling I'll be picking up some reading material from the library over the holiday break.

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