Our journey in the Autism Spectrum

Posts tagged ‘sleep’

I Saw the Light

I woke up this morning at 4 o’clock and couldn’t get back to sleep. Hubby was up at 4:30 (not all that unusual for him though). We were enjoying a quiet morning (as much as one can “enjoy” anything at 4AM) drinking our tea and watching the news. Next thing we know the boy is up and crawling into our bed.

BDC: Hey, Henry, what are you doing up so early?

Henry: I saw the light.

Me: It’s not light outside.

We encourage him to not get out of bed until the light shines through his curtains.

Henry: I saw the light inside.

BDC: Your door was shut Henry and only the kitchen light is on. (A small one over our sink)

Henry: *in his “duh!” voice* Uh, the light under the door.

Oy vey!  Now Lucy is up too!  Of note: the teen who is SUPPOSED to be up now, is still sleeping with her alarm going off. Looks like this is how we’re rolling today… :-/

Coping…??? Not so much.

As I begin to type this, it is just minutes before 6:00am CST. I have now been up since around 3:30am. Henry woke up with a dream. He didn’t say it was a bad dream, he just wanted me to lay with him for while. Hard to resist when he just wants some quiet snuggle time. At 4am I crawled back into my own bed but could not get back to sleep.

My mind was racing all over the place. And then suddenly my stomach seemed to leap up into my throat. I forgot to pay our Discover bill! Damn! I glanced over at my clock which was  glaring red. 4:32am. Double damn! My alarm was set to go off in about 15 minutes anyway so I hauled myself out of bed and down to my office cursing myself all the way. I quick threw some money at the credit card bill via online bill pay as if that would make it all go away. I was dreading having to tell Grant that our bill was going to be late. He probably wouldn’t be up for at least another hour. I spent the next hour or so feverishly working to clean up my office space, get bills in order, and organize our donation lists (with pictures) for itemization for future income tax returns. As if this would help erase or make up for the late bill. In case you are not up to speed on the whole spring cleaning/donation fiasco you can catch up here and here.

Grant knows I haven’t been coping well. I can’t seem to get anything done or keep track of anything. I am overwhelmed by the little things so then too the bigger things are doubly overwhelming. I am forgetting things. Losing things. Often.  Last night Grant watched me tear through one of my cabinets looking for a lid to a container all the while ranting to myself about how “the lids always disappear!” and “where the heck can they possibly go? Who uses a lid without the container? What would you use just the lid for?” I was feeling a bit crazed and this missing lid was about to push me over the edge. Just as I was about to search for another container with its lid, I saw the missing lid sitting on the counter, where I had put it while I was filling its partner. Oh.

Grant: “Babe, are you okay?”

This was just one of my many questionable “episodes” as of late.

Me: “No. Not really. No.”

He looked as if he was trying to absorb and process my response and just ended up looking at me helplessly.

I remember an e-mail I received some months back from my friend, *Hermione*, in response to one of my blog posts. I laughed at her perception the first time I read it and certainly it gives me a good chuckle right now.  Hermione has a daughter *Rose* who is just 6 months older than my oldest daughter, Molly. We have commiserated over the years through the pre-tween, tween, and now teen years.

From Hermione: I have been reading your blog…. You are quite articulate.  You describe so well the mixed emotions…. Happy to have a diagnosis that will give Henry the assistance he requires but all the scary negative emotions of the diagnosis, which is still hard to hear, even though you said you knew it was coming…

 Anyway, you sound amazingly skilled at handling all this. *Ron*  and I are barely able to cope with a “normal” teen…. Thinking of you and Grant and Henry and sending positive energy your way.

Articulate? Amazingly skilled? Are you kidding me? Upon my first reading her e-mail, I was immediately questioning that she even was reading MY blog!

She goes on to tell me what she’s been up too; working, reading, quilting (or rather, her not quilting),  and how she and Ron are constantly at odds with Rose, how Rose wants her room painted black and Hermione’s attempts to make is less black by trying to compromise.

“…. So although she may view it as “goth/modern”, I suspect everyone else will view it as old-fashioned and Amish.”

Quick side note: We too have compromised on the black in Molly’s bedroom. She got new black curtains and some new black decor to accent her already purple and lavender walls and bedding.

Hermione tells me of  her and Ron’s trials and trauma and drama with Rose and it all sounds familiar…except in our case, Molly wants to do everything and be brilliant at it with no effort or practice and then complains about it.

“[Rose] wants to quit piano…. At which point she will be doing nothing. Nothing at all, except texting and watching Anime and doing homework. No sports, no interests, no extracurriculars, no hobbies,  nothing at all. Except homework and being nasty to her parents. Ron comes home and goes into our room and hides. Comes out for dinner and goes back in again. And then Rose is crushed he doesn’t pay attention, but when he does, she is so often nasty…. He over-reacts and she needs to be kinder. It is all driving me crazy. Both of them. And then the dog got sick….. but nothing to complain about, really. How you do it is beyond me and you have my highest regard….Hermione.

 Did I mention that the *Weasleys* are big Harry Potter fans? Anyway, here was my response back:

 Here is my secret to coping (if you can even call it that): Alcohol, Hermione. Alcohol. That and making friends with Zoloft.

 Keep in mind that sounding skilled and actually having the skills are very, very different things! We get by. We laugh, albeit sometimes quite maniacally, to avoid crying. Molly is at odds with Grant constantly. The ONLY reason she and I are not at the same odds quite as often is I just tune it out. When I just can’t take one more snide remark or sneer from her I just shut down and leave the room. I try my best to avoid any kind of raised voice at all. This is not my strong suit but practice is forcing me to get better at it.  

We also have been trying to apply ABA strategies that we learned at TouchPoint for Henry to all three kids. That is becoming easier too. It’s not usually very fun but at least the verbage is getting easier for us. Yelling just fuels Molly’s fire. I now try to state what is expected of her and remind her of whatever the consequences may be and then I walk away. She has been known to follow me around the house for HOURS whining and complaining, yelling, screaming, slamming things, getting in my face….and I just keep walking away, avoiding eye contact, every so often repeating the expectations and the potential consequences. I pretend to read or surf the internet. I pretend I am playing a part and there is an important critic in the audience so I’d better make this performance good! (I have a friend who does the same to win an Oscar~ for myself, I just want to get out of summer stock). I don’t let Molly see me cry.

 I have not read anything in forever. I have at least 5-6 books sitting on the shelf waiting to be read. My escapes right now are Facebook and blogging and Black Phoenix Alchemy Lab scents. I am pretty sure that I am going through a midlife crisis and my alter-ego is trying to keep me busy. She has her own Facebook page. She wears glasses. She is supposed to be working on writing a book. Lots of half-ideas….nothing formulated enough to actually write down. So, we blog. Everything is a potential blog post. Nothing is sacred. hmmmmm……yep, don’t be surprised if you see this reconstituted as a blog post at some point in the future.

 I don’t see that as coping at all. I see that as a crazed, under medicated manic/depressive hanging on by a thread and shutting down and escaping whenever possible. And for the record, my oldest is not always that bad all the time. She is an awesome kid….but you know, she is still a typical, hormonal 13-year-old! So, I concluded with:

So, see, I really am not handling this teen stuff or autism stuff very well at all. I suspect really most parents don’t, Hermione. We just do what we have to do to survive it. We will survive it! Hang in there! You know where I live and how to get in touch with me if you need to! I am out here in the muck too! ~Karen

I do realize that I have a pretty sweet gig here and certainly there are MANY parents out there going through much worse, much rougher times. I get that and I am ever so thankful for my family, my job and our life.  But there are moments, lots of them lately, where I just can’t seem to get a handle on things…so much feels out of my control. I feel lost. My husband always knows how to “find” me and anchor me. But he is tired too. I ask so much of him.

So, flash forward to now…this afternoon… I’m tired, anxious, and have LOADS of things I need to do. And I am still not getting any one thing done. The little ones are “playing” by destroying the basement family room. Laundry did get started but just that, started. At some point I am going to have to do some work that I actually get paid for… I guess I will try to squeeze that in sometime after I hard-boil about 2 dozen eggs for the family fun night of egg dying and decorating.

Oh, yeah, and that late Discover Card bill? I was so freaked out about it and worried we would lose our low APR, and Grant was too, that he called the company. Turns out I had paid that bill early sometime late last month. So, we weren’t late at all…

Oh yeah, and now I guess I CAN mark one thing off my list as complete! Blog post. Done! Now, where did I leave that laundry basket…?

Sleepless in St. Louis

Having a child that does not require much sleep and gets up frequently throughout the night can  be very tiring, literally speaking! My son is five years old and for five years we have had countless nights with little to no sleep.  We know well the path of walking through our days weary, bleary-eyed, and in a fog. We have spent many days beyond exhausted! 

We don’t usually know when it is going to be one of those sleepless nights as Henry goes to bed usually quite well now. Though getting him to bed fairly easily was a long time in coming and quite a spectacle! (And probably warrants a blog post all on its own!) No, Henry and Lucy went to bed as usual last night with what we would consider some typical 5 and 4-year-old antics  but they did settle down and seemed to fall asleep soon after we tucked them in.

When sleeplessness occurs, Grant generally gets the “first” shift  and we always hope for that being the “only” shift. Let me add in here that Grant also does not require a lot of sleep and can fall back asleep in about 2 seconds. I, on the other hand, require much more sleep and it takes me much longer, sometimes hours, to be able to get back to sleep. So over these years Grant has taken on most of the burden of the night shift.  But even he has his limits.

Here is how these sleepless nights go with last night being no exception: Henry wakes up about 3 hours after he has fallen asleep calling for Daddy. Grant will go in and check to see if Henry needs to use the bathroom, tuck him back in bed and sometimes lay down with him. Sometimes for a few minutes, sometimes for more than an hour. Did I mention that Grant can fall asleep in about 2 seconds? Grant will finally crawl back into our bed at some point. Henry will lay in his bed alone for a short bit but if he doesn’t fall asleep he will be back up calling for one of us. On occasion I do get up to take the first shift but most often Grant tries to let me sleep as much as he can until he just can’t take anymore and then I get called in.  

Now, here is the fun part,  repeat the above actions 3-4 times a night. Yes, you read correctly: three to four times a night!

Sometimes Henry will doze off in between these times, but generally it seems that he is up for the duration, eyes wide open, staring at the ceiling, fiddling with a toy or book or his bear. 

For a long time we just could not keep him in bed on these nights or a screaming meltdown would ensue. No one wants that at any time of day but I for one, REALLY do not care for this at 2AM! And 3:30AM…and so forth. Most times Henry would just want to wander/pace the house or go down to the family room to watch TV. To avoid meltdowns, one of us, usually Grant, would go with him and try to doze on the couch.

Now for added fun imagine doing this not only 3-4 times a night but SEVERAL times a week! Yep! From about the time he was a year old until almost 3 yrs, this was a regular routine most nights of the week. And as bonus when Henry was about 17 months old, we added his newborn sister to the night shift. Grant and I have lost about 3 years of our lives!

Over the last 2 years these episodes have finally decreased to one or two nights every few months or so. Usually now Henry will go back to his bed. Sometimes he is able to get up, go to the bathroom and back to bed and asleep on his own!

What is amazing about these sleepless nights is that most often the next morning Henry won’t really “sleep in”. He gets up about the same time he does usually and is good to go for the day with just maybe a few hours of sleep! I can count exactly 3 times in the last year when after pulling an all-nighter that Henry did actually fall asleep later the next day.

But not today. Have I mentioned how tired I am today?

Grant and I have tried many different things over the years to help get Henry to sleep and STAY asleep. Some helpful, some not so much. Last year I went to hear a nurse practitioner specializing in sleep disorders from a local sleep clinic give a talk about young children and sleep issues. I enjoyed her talk and felt really good that Grant and I had tried a lot of the tactics she recommended. Some worked. Some, again, not so much. At the end of her talk she opened the floor up for questions. I spoke up and asked if she had any good suggestions or books or resources for dealing with sleep issues for a child on the Autism Spectrum and with ADHD.

After a brief pause she said, “None that I like.”

Another pause and then she added, “If it is any consolation, I have found that many children on the Spectrum do seem to grow out of their sleep issues.”

I thought, “Really, Lady? That’s it? No. No, I don’t find any consolation in the hope that he hopefully will out grow this! I am TIRED! Mentally, physically, emotionally. I can barely see the nite-lite on in the kids’ room at 2AM because I am so exhausted let alone some possible light at the end of what seems an endless tunnel!”

 We have continued to stumble forward since then and Henry really does seem to be growing out of this sleeplessness. Every few months he will be up again, and again, and again….and we are tired again. Tired still.

Perhaps one day we will look back at these times, those many sleepless nights  and “lost” days and laugh. But quite frankly, I think I would rather take a nap!

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