Monday, July 21, 2014

Sleep-anxiety, Inc.

My tired little boys are in bed after a looong weekend spent at the dropzone. We had a great weekend and even got visits from a few different friends. One group of friends was able to go skydiving (they had so much fun!) and some others were not able to go (the plane needed unexpected maintenance...booo). We also got to spend some time with our good skydiving friends who we haven't seen in a while who were visiting from Florida!

I wish I could report that our weekend was filled with stellar behavior. It was not. It was pretty rough at times. Thankfully Dan was in the vicinity to help with discipline and behavior management. That helped a ton. For the past five nights or so Elijah has reverted to not sleeping well again. He wakes up exhausted and is up constantly throughout the night. A few nights ago the fitbit recorded 42 times awakened in a 9-hour period! Yikes! I have done a TON of thinking about this and so many other aspects of our oldest cutie.

FYI! The rest of this post could be really boring, so I will not be offended if you click away now. It helps me so much to write these details out, so bear with me if you wish to continue reading! :)

I have said so many times over the past year or so that once we get Elijah's sleeping figured out, so many other things will fall into place. I'm beginning to understand that it's not that simple. We have done everything under the sun to get that boy sleeping well and nothing has worked for him on a consistent basis. Here are the things I feel like we DO do well (not sure these things help, but they definitely can't hurt):

- We have a very strict bedtime routine that we stick to every single night, even when we are away from home.

- We keep the boys' bedroom (at home and at the dropzone) TOTALLY pitch black.

- We have two sources of white noise in their room to drown out all outside noise.

- We bought Elijah a weighted blanket (20 lbs!) that I've read helps to calm people with sensory/sleep issues.

- We consistently put him to bed early since he tends to wake up so early in the mornings, no matter what time he goes to bed.

- We make bedtime a totally relaxing, predictable and enjoyable routine for our boys.

From what I have read about both ASD and NLD, most kids with both of these diagnoses have sleep issues due to the sensory and anxiety issues also involved. That tells me that we need to address the anxiety and sensory issues first, and only after we do that will the sleeping improve. We have tried many months' worth of sleep meds that have not worked and that have actually caused more strife than help! I'm not eager to put anything else in his body at this point. He is super sensitive to medication and that has always been the case. Even antibiotics and Tylenol affect him negatively.

So how do we help him with anxiety and sensory issues?

- Routine helps a lot, I think. Summers are NOT good for routines, but we can continue to do things consistently as a family no matter where we are (dropzone, home or otherwise).

- Elijah has so much anxiety surrounding the topic of potty training, so we have to do our part to minimize this. I was reading tonight in an NLD book that kids with this disorder so often have a difficult time prioritizing bodily/emotional needs. It is tough for them to order hunger, tiredness, the need to use bathroom, pain, etc, in their hierarchy of needs. This makes a lot of sense to me. Dan and I have instinctively started having tons more patience with accidents because we are beginning to understand that he isn't trying to make us upset/crazy/mad/ready to run screaming from our home. It can be soooo frustrating and I feel like it would be nearly impossible to be totally calm during the multiple daily issues we encounter. I have really tried to be as cool as possible regarding this topic and I hope we can be semi-consistent with this and reduce anxiety about potty for ALL of us. He IS slowly making progress and I literally need to remind myself about those baby steps once an hour!

- He has some other anxiety triggers that I've been trying to avoid or really help him out with. Getting the tape residue on his arm off from his surgery? Not important (this is a HUGE source of anxiety for him). It'll come off eventually. Watching him suffer through social scenarios? When I'm present, I coach him as much as possible to help ease his pain. Hopefully over time he will begin to hear my voice in his head and find comfort in that. "Elijah, it's ok! He's just a kid! Say 'hello!' Ask him if he wants to play!" I've also tried to be more sensitive to some of his unrealistic worries (OCD-type stuff). Tonight he was really concerned and obsessed about a tiny little pimple he has on his arm. He did not want me to touch it, but he was crying at bedtime because he wanted it to go away. I prayed for his pimple, kissed it and did everything I could think of to give him peace about it (as opposed to making him feel silly about being worried about it).

- Dan and I have learned through reading about NLD that busy environments are really overwhelming for Elijah. It is difficult for him to interpret a lot of visual information on top of tons of noise and other stimuli. For the past few months, every time he is in an overwhelming setting he breaks down. This is usually evident by the hitting, kicking, name-calling, screaming, etc. It can get reeeeeeally really ugly. I've found that when we are in unpredictable or overwhelming environments, I constantly walk on eggshells. Things can make a bad turn very quickly and it can be really challenging to manage, especially if Dan isn't around. I have been trying to get Elijah to recognize the overwhelmed "too much" feeling before it gets out of control. He isn't quite able to do this yet, but I'll continue to point the precursors out to him. Lately I have been providing him with chill-out options when I spy the overwhelmed behavior taking shape. I will let him spend time on the iPad (learning apps only) or a book or a huge mama snuggle (thankfully, he still LOVES this one). Good things have come from this! There is a country-states app on our iPad that he loves. He will sit for hours, learning facts about countries and U.S. states. He can point to the exact location of every single African country on a map! Seriously! He knows WAY more than I do about geography and he has such a hunger to learn it all. I feel like these sorts of solutions are positive outlets for him, so we will continue to seek out other helpful coping strategies.

- I've read a little bit about the Tomatis Method (listening program therapy) and the Alert Program (this deals with self-awareness, which is such a deficiency for Elijah) and I am SO excited to explore both avenues with Elijah, hopefully with the help of his OT.

Whew! I think that's all for now. My brain hurts. It took major effort to get all of that out in a semi-organized manner. If you are still reading, I'll send you a medal for your patience. Thanks for reading and caring and we love you for being here! Have a great week!


Anonymous said...

Have you heard of the Incredible 5-Point Scale? I have used it with students with ASD with great success in the past (especially with identifying emotions like feeling overwhelmed or frustrated)!

Sarah said...

A Medal!!!! Woohoo - does it count if I'm like a week late? Love you guys!