… from the bungalow

ASD and Sleep Issues: Devotion in the face of exhaustion

9 Comments

In my introductory post about F (TLP), The Little Professor: The birth of a son and rebirth of a dad, I mentioned that he has sleep issues. I understand this is typical of kids “on the spectrum.” He and I have been dealing with it for over 7 years now.

TLP wakes up 2-3 times per night on average. It’s not as bad as I’ve heard other parents describe. At least he goes back to bed. I’ve been able to teach him that much. But he doesn’t just wake up. A lot of times, he’s awake and wants to be up. If not for the lock on the outside of his bedroom door, he’d wander around the house eating God-knows-what (TLP has lots of food restrictions) and playing video games until his brain caught on fire. (I figured a lock on his door was easier than locking the fridge, television and every cupboard, cabinet and room in the house.) As it is, he mostly just bangs on his door–loudly.

Early on, that *BANG* that has jarred me out of sleep literally thousands of times (no kidding) would make me downright angry. It’s very startling, it’s very disruptive and I haven’t always dealt with it well. It’s also bad for your health. People who chronically lose sleep tend to perform poorly at work and/or school and put on weight. Energy, motivation and patience become very hard to come by.

(If you’re asking yourself why I didn’t just put foam padding on his door, it’s because we had sliding pocket doors which didn’t allow for that, and padding would just get picked at and stripped off anyway. We’re coming up with ideas for solutions, but that’s not really the point of this post. That said, I welcome your suggestions!)

That’s my lot. TLP is mine and I am his. On some level, I believe that he and I chose each other in spirit before we even entered this world. But would I wish it for anyone else? No way. Yet, there are people in this world who make that choice. I’m thinking specifically of those folks who become parents of kids with special needs through marriage or adoption.

tiredTake Karin (my fiancee), for example. She knew before falling in love with me that my life was tricky. She took that into consideration before deciding that it was a good idea to take our friendship to another level. True, she may not experience the same level of heartache that comes with accepting that your child is different. But she does love TLP. And aside from that, love or no love, being jolted out of sleep night after night after night is really freaking hard to live with.

So today I wanted to share my deep appreciation and affection for Karin. She willingly stepped into this role of step-mom for nine months out of the year. Thankfully, I’ve (mostly) learned how to deal with the sleep thing. So much, in fact, that I usually don’t even wake up from that first bang anymore. And since she has a better chance of getting in a nap during the day while the kids are in school, she usually pops out of bed before I can even respond. That, my friends, is devotion.

It may be typical, but that doesn’t make it any easier to deal with. What does make it easier is experience, patience and learned-from mistakes. I’m blessed to have a partner who cares enough about me and our family to learn to handle these things.

Awesome.

Parenting from the bungalow,

~ Chris

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Author: Chris

A dad with a self-evaluation complex. Also a music therapist, college enrollment administrator, and hippie-nerd.

9 thoughts on “ASD and Sleep Issues: Devotion in the face of exhaustion

  1. It made me cry, too! I am so grateful to Karin for her love and devotion to F and S. I only wish I could be there to help more. Karin is a beautiful human being and I will always support her however I can and appreciate her more than words could every say.

  2. Thanks, baby. Now you’ve gone and made me cry. I love you and I am indeed devoted to you and this family. Thank you for letting me into your world and making it OUR world. I know it will get better. It always does.

  3. Thank you, Mary. I appreciate your support more than YOU know.

  4. My 12 year old was diagnosed with mild Asperger’s three years ago. I thought having Bi-Polar would be hard enough… then becoming a single parent… then having a special needs child… Luckily CJ’s ASD isn’t severe – though I don’t know that I could keep it together for a more severe ASD.
    I agree that CJ’s spirit and my spirit were together in a past life, and that we are most likely kindred spirits. There’s a connection there that is indescribable, I know you know what I mean. It’s a hard job, being the parent of a special needs child. and I wouldn’t change it for the world.

    • I hear you, Emma. It helps to know that we’re not alone. I’m so glad that you have a special connection with your son, too. Thanks for reading and taking the time to comment. 🙂

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