Tuesday, November 27, 2012

Telling it Like it Is

Ok, so here it is....a rant.  I try to stay positive about life to keep my sanity, but I write this blog because people wonder what it's really like on the inside of an Autism family, and this morning, at 4:51 am, as I have already finished my shower, and already watched the complete Toy Story movie with Nicholas, I'm going to tell you how it really is/can be.

Here is just a tiny glimpse into the night-life of this family. (Which I've shared before, but it's ongoing, and evolving at this point.)  Now, granted, it does not happen every night, and in fact, it's happened less lately than it has in several months (thanks to drugs??? See Drug Trials and Tribulations)  But when it happens, it happens, and it's bad.

After a long day with the kids,  I am usually wiped out. It is rare for me, anymore to stay up past 9 pm during the week, mostly because I'm afraid of who is going to interrupt my sleep on that given night, and I just want to maximize my zzz's while I can.  This means that my husband and I spend very little time together to begin with, because dinnertime and bedtime activities fill the hours when he comes home from work around 5:30pm, and by the time the kids are down, the kitchen is cleaned, and I have had 15 minutes to look on my computer at whatever I need to, I have hit the wall and can't stay up any longer.  So you have that....

And THEN, there are the nights when someone wakes, just for a quick few moments (and when I say "someone," I mean Nicholas or Brody....Avery is, and always has been my sleeper, thank God) and these nights aren't so bad because at this point, because after 4 solid years of interrupted sleep from having newborn babies in the house, it's just what I'm used to.

But THEN, there are nights like tonight.  And tonight was a doozie.  I decided to go to bed at 8:00 pm with the intention of watching a couple of my guilty pleasure shows from the comfort of my Kingsdown mattress. However, I was so exhausted that I didn't even make it to 9pm (at least I don't think I did??)  Chris, as usual, watched his shows on the couch and came to bed whenever....and while usually I hear him come in, I was OUT. I'm generally one of those people who wakes easily, and then can't settle back to sleep for hours, but sometimes life just catches up to me, and I'm done.

So, of course, around 1 am, I hear that distant, familiar whining noise coming from Avery's room,  which Nicholas now shares because we were making our attempts to get BRODY to sleep through the night without interrupting the other kids' sleep (which has btw, been much better, but there are still a few wake-ups here and there.) Nonetheless, the combination of sleep training an infant, along with Nicholas' erratic (at best) sleep habits has made night-life in our casa more than a bit of a challenge.  But anyway, back to the here and now.... this whine is Nicholas' way of saying he needs something....milk maybe? Perhaps he just had a bad dream? Or maybe he has an earache?  Honestly, I usually have no frigging idea what he needs, and I think that's where the fury and frustration starts to build in me before this process of trying to get him back to sleep ensues.

Not fury at him, but fury that he has to feel like we have no idea what he wants, and he's right.  It absolutely KILLS me as a mother, because I'm so frustrated and sad that I can't soothe him or meet his needs immediately. Frustration that knowing that depending on how long it will take to get him to sleep, I know the clock is ticking until one of the others gets up, therein leaving me with even less sleep to deal with the normal daily routine of handling three children under age 4. (Not a good combo, for the record.)  Stress that during this unpredictable process, Nicholas will wake Avery, and now we'll have two to deal with at 2 am.  Grief that this could be a problem for us for years and years to come, and I see no light at the end of the tunnel. And then more fury, because why in the HELL does this whole Autism thing have to be happening in our family??? My blood pressure rises immediately when I go into the room to try and settle him and wonder what his response will be.  So, there are the slew of super honest and very real thoughts that go screaming through my mind each time this happens.

But I digress, because sometimes, this little whine only lasts for a few minutes, and he will go back to sleep. Or sometimes, it will last for hours, and never go to sleep.  But he also doesn't get upset or wake his sister in this case, and it's almost like he is just in there talking to himself. This scenario, we have learned to deal with, because he doesn't get out of bed, is safe in his room, and you can't force someone sleep if they aren't tired.  With Autism, circadian rhythms are allegedly not intact, and these kids don't respond appropriately to the social cues (like darkness) that tell their brain it's time to sleep.  (This is one theory...but then again, it seems like there are theories for everything that is Autism, and no fixes.....oops, sorry...here comes my bitterness seeping out, but please, it's now only 5:19...give me that at least. )  

And yes, to those who wonder what we've tried, we've tried it all (short of Benadryl because the drug study that he is currently a part of will not qualify him if we use that as a sleep aid. It can affect their study data.  However, the medicine he is taking as part of the study allegedly help with sleep......)    Regular bedtime routines, regular rituals, baths, lavender oil, melatonin (which he still gets,) letting him wear headphones to hear soothing music, massage/deep pressure, weighted blankets, and God only knows what else that I can't remember at this moment because I am now running on 4 hours of sleep....none of them work flawlessly.   And since he now has a full day of school and therapy, he IS exhausted at the end of the day. He does not nap, and he works his little butt and brain off ALL day, and this issue is not a matter of getting him to sleep. That has not been a problem at all.  Half of the time, he passes out on the couch just before I'm ready to put him to bed anyway.

Anyway, back on track here....this night, he woke at 1 am.  My husband (who I will credit here as being very good about getting up with the kids) popped into the room to check on him, came back to the room, and I thought it was going to be one of those nights when he just either drifted back to sleep, or "talked" until it was time to get up for school. However, at 3am, the whining began again, but more intensely this time.  We let it go for a bit, but eventually, when we heard Avery now chatting it up in the room too, my husband went in to dissolve the "situation."  However, Avery was now WIDE awake, and Nicholas was PISSED.  He clearly wanted something, and neither of us knew what it was. When Nicholas is pissed, this whining turns into hitting, kicking and thrashing.  And I won't lie, I am not a nice person when I get kicked in the stomach and slapped in the face at 3 am. Sorry, I'm human, and that's just a fact.   Previous fury already in place (see above,) this physical assault sets me over my oh so steep edge that I am perpetually dancing near.  So here it goes....I get frustrated, Nicholas gets frustrated, Husband gets frustrated, Avery cries, Chris and I yell at each other because both of us are so damn tired and have no idea how to diffuse this situation that we can only take it out on each other, and the chaos ensues from there.

So what was it that he wanted??? Well, it wasn't milk, and it wasn't music, and it wasn't to be in his bed, that's for sure.  After a failed attempt at putting him in bed with me to watch a video on the tablet (which generally will calm Nicholas) and hastily sending Chris to the guest bedroom so at least one of us could sleep (where he eventually ended up with Avery anyway because she was now awake, overtired, and crabby) I finally gave up.  Nicholas was still not happy because he still didn't have what he wanted...whatever that was. At this point, the adrenaline level in my body was just beyond the point of even TRYING to continue this battle for the purpose of me getting my sleep, and clearly (as he's proven in the past) Nicholas can sustain an entire day of school and therapy after having been up all night anyway.  SO, I gave him what I eventually knew he wanted.....his Ipad.  Yep, he was having a COMPLETE fit at 3am because he wanted to play games on his Ipad.  Ugh....really??  So, what else was I gonna do? Out of sheer exhaustion and defeat,  I gave it to him, grabbed Avery from Chris' (er, the guest) room, put her back to bed (after a small fight on her part) and decided to take a shower at 4am and make a 10 cup pot of coffee, of which I plan on drinking most of today.

So, what is the moral of the story?? Because I can't just write to bitch about my life...it's just not my thing.  The take-away from this is that today, when you are driving down the road and someone is a total a**hole and cuts you off or zooms by you like a bat out of hell, or if you are out Christmas shopping and someone just pushes their way in front of you at the checkout, or takes that very last item on the shelf that you came specifically to buy, just give them the benefit of the doubt.  People have things going on in their lives, good, bad or ugly, that affect their personalities on any given day, and you do too.  Mine, for today, happens to be sleep deprivation, and I don't think I'll end up being a very pleasant person today around 2 pm when it finally hits me. I don't deal well with it, and I don't like it.  So, rather than assume someone is a wart on the rear-end of society when they do something inappropriate in public (not to say that I am going to be this person doing something inappropriate, but I have been known to let a little road rage sneak out of me from time to time) my situation helps to remind me that maybe that person was up all night the night before against their will, or are stressed because they can't pay their bills, or just had a loss in their lives.  You just never know.

And with that....I'm going to pour my second cup of coffee.....

Monday, November 12, 2012

Happy Birthday to My Babies!

I owe my lack of posts lately to life, and birthdays!  My two oldest just shared a birthday party this a couple of weekends ago, and while it was a little crazy, it was just what I wanted it to be--easy for me, and fun for the kids.  My awesome little Nicholas, just turned four (on the 4th) and my sweet and sassy little Avery just turned two (on the 2nd).  Both of my little ones were election day babies, and I remember when Avery was born, shortly after thinking that this "shared birthday" thing would be such a bummer for them as they got older.  Now that time has passed, and we have learned more about Nicholas' personality, I actually consider this timing to be a huge blessing.

I can remember Nicholas' first birthday party. I was so excited, and at the time, we had very few kids toys in my house.  We threw a huge celebration at my home that was buzzing with friends, family, and all of their kids.  It was a good time, and we got all of the appropriate pictures for a first birthday party...except one....the "cake smashed all over the face" one.  I remember vividly when everyone gathered around his high chair, singing happy birthday,and putting the cake with the one, bright burning candle in front of him.  I knew he would not blow it out, and I knew he would not eat the cake.  But what I didn't know, was that he would actually be upset by this little ordeal.  When the song finished, I blew out the candle for him, and just hoped that he might smash the cake in his hands or something.  I mean, everyone was just staring at him and waiting for something to happen.  And, it did.  He became agitated, and did not want ANYTHING to do with the cake.  I can remember feeling the pressure of that moment, and I didn't like it.  And in retrospect, he didn't like it either.  And so, I will not do that to him again.

Instead, this year, we had a gathering at a place that I knew both of my babies enjoy, and made it less about the cake and presents, and more about the fun for the kids.  Avery loved the attention of the birthday song, and she helped blow out Nicholas' candles when the time came.  She got to have her cake, and eat his too!  (ba-dum-bum!) And the kids had an absolute blast playing in the giant (and unfortunately very crowded) play-place, but without the pressure and expectation that the "typical" birthday activities of blowing out candles and opening presents often bring for us.  And so, this is likely to be our new birthday routine....finding a social place where both of my kiddos can have a special and fun time, and celebrate their birthdays in their own, unique ways.  And this is why I now feel it is a blessing that they will share their parties. As they grow, I can see Avery being Nicholas' little protector in this situation, and taking over the "expected" activities for him. Not because I don't see him ever being able to, but I don't see him really wanting to (in the near future, at least.)

God works in mysterious ways, and I think He gave me my little Avery at exactly the right time.  He knew that birthdays might be a challenge for Nicholas, and decided to make sure that he had a buddy to help him out, and to share this special and important time with him. She will grow up to be Nicholas' little angel, I suspect.  Yes, they don't necessarily play together now, and he pushes her, and she shoves him right back. Siblings will be siblings, after all.  But I know down the road, when she can better understand that her brother might need a little extra help sometimes, that she will be up for the challenge, and Nicholas will grow to love and appreciate his little sister in ways that other siblings may not.

So here we are, 2 and 4 years later, and I feel blessed to have both of my little election day babies. They have both grown so much, and I am so very proud of them.   So happy, happy birthday to my sweet, perfect little beings.  You have enriched my life in ways I could never have imagined, and I will always think of you both as my very special gifts!