Just another site


on January 11, 2012

I promised myself I’d blog more for our friends & fans, but I feel like I’m dealing with “Blogger’s Block” or something.  So, in true writer’s fashion, I figured I’d just start pouring out all the nonsense in my head in a brainstorming-stream-of-consciousness way in the hopes that a decent piece of reading would come of it!

Mostly, I’m struggling these days. I want to say everything is great and to be positive about our experiences. I want to say that my son is the picture of Autistic perfection (um, is that even a phrase?) and that he is moving forward at such a wonderful rate that I may have nothing else to write about. But I would be lying.

The truth is, we’re in a stage of regression. New to Autism?  It means that you take 2 steps forward, rejoice, and then all of the sudden you’re 3 steps backward. And it sucks, because you thought, you hoped that you were really on a roll and that your child was doing better. And it doesn’t mean he isn’t. It just means that right here, right now, we’re doing a little worse instead of a little better.

So, obvious question…Why? Well, among other things, I’m struggling because Alex’s sleeping habits have changed. I don’t know what’s wrong, I can’t explain it. All I can say is that he doesn’t want to sleep in his own bed anymore. He wants to sleep with us. We have tried taking him back and taking him back (to his own bed), over and over, like good disciplinarian-type parents should do. But one night, I looked in his eyes and saw pure, sheer terror. He was afraid. It was then that I knew in my heart it would be ok to let him sleep with us for a bit, because something’s wrong.

Nevertheless, our queen sized bed is not big enough for my 6’2″ husband, my 4′, 57 lbs child and myself (you don’t get the pleasure of my measurements). So I had this brilliant idea to add a twin aerobed mattress on one side of our bed.  My hope was that we could deposit him there when he fell asleep, then later, when he woke up (in keeping with my nightmare/fear theory), we would be right there to console him.  Well, it’s not all working out as perfectly as I’d hoped.

As long as we can get our son to sleep (like on the couch) for plenty of time before we put him in the Air bed next to ours, he will sleep there…until about 12:30 am. And then he climbs right into bed with us. Most of the time he talks (meaning he is repeating, mimicking or reciting things he has heard that day from memory) or is basically awake until between 2 – 4:00am, then will fall back to sleep just before Daddy has to get up to go to work. And then, of course, he’ll be wide awake ’round 5:30, which makes this nite owl very unhappy.

And people wonder why I’m not having more children? I’d be a zombie. Permanently.

So, for those of you who are wondering, there are multiple things you look at when you have a sleepless child who cannot communicate well…is he having night terrors?  Nightmares? Seizures (prominent and easily missed among autistic kids)?  My husband thought he felt Alex twitching a lot the other night, so you can imagine how I am dealing with that too.

You may read this and think, 1) “oh that’s just a phase, it will pass” or 2) “oh, they just need to put their foot down and make him go to his own bed.” Well here are some answers to you about why I am so worried and upset by this:

1) My son is 5 years old and Autistic. He has been eating *only* Dino-Buddies Chicken Nuggets for meals for 2.5 years. We were hoping that was a phase, too.

2) My son is 5 years old and Autistic. If you would like to come over and “put your foot down” for me and make him comply, you would be most welcome. Bring your caffeine, though…gonna be a long night(s).

Anyway, yeah, I know, “this too shall pass.” I get it, I understand how this works, and yeah, I know I’ll get through this. But I lost a lot of sleep with stupid antics in my youth, so this is hard for me. I have to tiptoe through my room at night to get up and pee. I have to get ready for bed early enough so that all I have to do is crawl into bed as quietly as possible so as not to wake my son. I’ll spare you the details, but imagine a husband & wife trying to gather any sort of alone time in the middle of all this? Not so much.

So anyway, our family is not sleeping well, due to our sweet little boy because of God-knows-what. And it’s been this way for about a month. So if you’re one of our friends who sees us out & about, please award us a little extra grace if we get snippy or emotional. Sleep comes in small quantities here.

2 days ago, I fell to my knees, placed both hands on Alex’s little twin Aerobed next to our big bed, and all I could do was pray. And maybe that’s just the best thing I can do right now.

In closing, I guess if I could have one wish granted of any I desired, I would just want my autistic son to be able to tell me what’s wrong, or what’s right, or even just what’s what!  I want to do what is right for him, and if that means getting him back to his own bed, or letting him sleep with us for a while. I don’t care. I just wish I knew.

I just wish I knew.

P.S. Please tell me someone caught on to the Beastie Boys reference in the title…?

P.P.S. Brrrraaaaiinsssss…


2 responses to “NO SLEEP TILL…

  1. jeanine castaneda says:

    That’s the hardest part….not being able to know just what to DO! With all my heart I wish I could give a suggestion but it wouldn’t help. They are all to diffrent.loving and praying are as good as it gets and I think they are enough…..but darn it all I wished they worked faster!

  2. Debbie Popov says:

    And…… as they say, this too shall pass! Ask me I know! LOL!

    I don’t know if you would be interested but Dr. Dramov is a Naturopathic Dr. in Tigard. We have been using him for years. His speciality is Austism, ADHD, etc. I truly trust him and believe he might have some answers for you.

    He is very, very good at what he does! He does a lot of blood work, etc and truly looks at all the “reasons” like body function, allergies & outside factors to solve an issue. I can honestly say he hasn’t let us down yet. Food for thought!

    As you well know from camp, I have been on my knees praying many times over! I still pray daily but don’t have to get on my knees and “beg & plead” quite as often! Hang tough!



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