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.....

A Video Says a Thousand Words

I absolutely have to share these with the world!! I am so proud of my little man, and how hard he's been working over the past 14 weeks.  For those who have just joined in reading my blog, N started ABA therapy this summer, and would barely sit at the table, let alone do any real "work" during the sessions.  And now....well, I'll let these videos speak for themselves. I was shocked and amazed! 

 I must just say one thing though.  As a mommy of an autistic toddler, I have all but given up (and purposely avoided) reading anything to do with typically developing peer milestones.  However, after seeing these videos, for the first time in two years, I actively sought out this information because for the first time in two years, I actually began to wonder if N is ahead of the game in some areas! (I'm still not sure, but regardless, he seems to be right up there with the rest of his 4 year old gang...and he's not quite 4 yet!) 

Oh, and to the doctor who said that Nicholas' issues "would likely be more cognitive than physical,"(see Drug Trials and Tribulations,)  I would like to let you know that Nicholas is going to prove you wrong!!! That is all. 

Please enjoy these movies, and feel free to say wonderful things about N's awesomeness! (Says a VERY proud momma!!!)  :-) (Oh, and sorry for posting only links to the videos instead of the real thing, but it was taking too long to upload all of these.  Make sure to check all 5 out if you have time! ) 

Video 1 Taken in late August

The rest of these videos were taken in late September....even in THAT time a huge jump in progress...

Video 2

Video 3

VIdeo 4

Video 5

Drug Trials and Tribulations

At last, a post dedicated to Nicholas' drug trial.....we've only be a part of it since May, so I've only procrastinated a tiny bit!  I guess I should explain from the beginning, so here goes....

Once upon a time, not long ago, Nicholas had a primary diagnosis of Hypotonic Cerebral Palsy.  This is basically a blanket term to describe his motor delays (like the fact that he didn't walk until almost age three, among other more subtle but notable things.)  Now, when we first heard this diagnosis almost 3 years ago now, I was confused, but a little relieved because at the time I thought this explained ALL of his issues personality "quirks," and that this was going to be the end of our search for what exactly was going on with him. For example, he has a severe aversion to foods that are not familiar, he doesn't like to put his hands in a mid-line position, he likes to spin and hang his head upside down....etc. etc. etc. When he was a baby, he constantly arched his back, and had very low muscle tone, and had (and still does) an array of sensory issues.  It was explained to me that these various "quirks" could all be a result of the CP because often the brain does not fire correctly, and this can manifest in a million different ways (despite the fact that his MRI showed no physical brain damage.)   At any rate, we accepted this diagnosis at the time, and took the recommendation of the doctors to pursue physical, occupational, and Speech therapies for his various issues.

We did these things diligently for a little over 3 years, and during that time, his biggest accomplishment was finally learning to walk.  It took a lot of our (and his) time and dedication, and along the way, I endured 2 pregnancies and births of new children in the midst of these hundreds of therapy sessions. It was a crazy ride.

Because CP (in our minds anyway) implied that most of his issues were to be physically related, walking was one of our main concerns, and we were elated when he began to finally walk on his own, learned to get up from the ground into a standing position, and do all of the things that he should have been doing related to walking in the previous two years. However, after the walking goal was achieved, my focus for him began to shift into teaching him to provide some kind of functional communication to us of his basic needs. My belief, at the time, was that the low muscle tone (related to the CP) was the reason he was not able to talk.  I did not even let Autism enter my mind.....until we made our annual doctors appointment with our physiatrist.  I will never forget the blow to my head and heart, when after he witnessed and celebrated Nicholas' new skill of walking for the first time, that he said bluntly to me, "I think you will find that most of his issues down the road will be less physical, and more cognitive." I froze....I couldn't even ask what he meant by that, because I was afraid of what his answer might be.  As I had been told a million times before, there is no crystal ball to see where his future will lead, so we can't tell you the extent of his disabilities, and basically, good luck with that.  It just plain sucked (and still does.)

After this visit, I started to read about Autism.  Obviously, at the age of almost three, with no voice,  this concern had entered my mind and I finally felt ready to acknowledge it.  Though part of me had suspected this long before that moment, my feeling was that even if his diagnosis was Autism vs. CP, the therapists that he sees would treat the symptoms, not the diagnosis. (In fact, that's what they all told me when I would mention getting him evaluated for ASD.) In other words, I felt that we were already getting him all of the help that he needed, and further, insurance would cover it under a CP diagnosis, and unfortunately this is not true under and Autism diagnosis.

Fast forward to this May.  Leading up to this point, my concerns about Nicholas' language had grown exponentially, and I had been reading non-stop about Autism and ABA Therapy, which is the only scientifically based therapy approach proven to help those with Autism. (this is not to say that other therapies don't help other kids, but just that this is the only one that has research and data to back its success.)  There was no doubt in my mind that he fit the bill for the diagnosis.  However, the evaluation for Autism is extremely expensive (sometimes in excess of $3000), and the therapy runs anywhere from $40,000 to $60,000 per year....and it is NOT currently covered by insurance. So, what were we to do???

Well, I had heard of a local and well-known neurologist in the Autism community who often is involved in research studies for autism.  I decided we would start there. Upon arriving, he did a full interview with us, and observed Nicholas for several minutes before making his recommendation.  He said that his wife (Mrs. PhD) was currently conducting a drug trial on Autistic children between the ages of 2 and 6 years old. He felt this might be a good option for Nicholas, because not only would he have a full and very thorough evaluation for autism (at NO CHARGE to us!!), if they qualified him for the study by diagnosing him with Autism, the drug that these kids have been taking now for about 3 years (we were at the tail end of this study) has been extremely successful in the areas of social skills and communication, which are his two largest areas of deficit.  Without boring you with too many of the details, the drug acts as serotonin (of which Autistic people tend to have low levels in various parts of the brain,) and helps to stimulate the specific neurons responsible for social behaviors, cognitive and communication abilities. Things like attention and focus improve, eye contact, and reductions in repetitive behaviors (like in kids who rock or flap) have been observed.  The doctor even noted that in some children who had only two or three words before taking the drugs had begun speaking in full sentences within weeks of taking it.  We sat in awe as we listened to the doctor. Sounds too good to be true, right?

This was, perhaps, the very first time in our entire journey that I left a doctors office filled with hope instead of drenched in tears and anxiety.  I called the study coordinator immediately after walking out the door of his office, and we had him scheduled for his evaluation, which included the various standardized tests administered by a psychologist for Autism, as well as a full physical, blood work, and a PET scan.  This was no joke!  In fact, this was much more thorough than any eval we could have paid for.  At the end of the 3 hour visit of evaluations, and our second half day visit to conduct the pet scan, the psychologist entered the small hospital type room where we sat with Nicholas, who was contently watching  PBS on the television mounted on the wall.  My anxiety was high....this was it.  We will know once and for all what his diagnosis is, I thought to myself.

She chose her words carefully, and as she handed me the Autism Speaks "First 100 Days" kit, she confirmed what I had, yet again, suspected for months.  I think she expected more of a reaction from us, but for some reason, in that moment, I simply took the thick packet of information about Autism from her, and nodded for her to go on.  She explained his test scores, and said that he qualified under every test as having a diagnosis of Autism, and as a result, they would be happy to accept him into the trial.  My emotions were very mixed at this point, but I think because of the hope that the neurologist had given me, to have a diagnosis such as this made at the same time as being offered a nugget of hope that a drug might be able to help, him changed my reaction significantly from what it would have been had we just gone to a clinic and been told "Yep, he's Autistic.  That will be $3000 please. Thank you and have a good life."  That is basically how I felt his diagnostic process had been up until this point.  Short, sweet, and with no direction or hope.

The caveat to this story is that while Nicholas was accepted into the study, it is conducted in a  double-blind fashion, which means that we do not know if he is receiving the medication currently. His possibilities were to receive one of two different doses, or a placebo.   In the first weeks of the study, I (and others) did notice a significant increase in his ability to be attentive, and much improved eye contact.   I still see these things, but since then, I have not noticed many differences since he began the drug. (He is definitely not speaking in complete sentences!)  However, having begun his ABA therapy concurrently, I see drastic improvements in him in general, and perhaps it is because he is able to focus better due to the drug, and the one on one intervention of the therapy keeps him engaged long enough to learn. Or, maybe I'm imagining it all, and he's on the placebo.  We may never know.  However, beginning next week, the voluntary portion of the study begins, which means that he will definitely receive the drug (if he isn't currently already) and we just will not know his dosage.  This phase will go on for 6 months, and you can bet I'll have my extra-sensitive eyes on him watching for any changes.

At the end of the day, I think that this is a great opportunity for our family to help do our part in finding a cure or at least a treatment for Autism symptoms.  It was a difficult decision to put him in the trial, not knowing if he would even get the drug for the first six months. This was because the doctor who recommended us to this trial offered to simply put him on the drug under his care if we wanted to be sure that he was receiving it as soon as possible (rather than wait it out for the first six months of the study.)  At his age, timing is critical, and the earlier the better in terms of receiving the drug (so says the doctor. )  But we opted to try and do our part for science, because it is important, and it is the right thing to do.  Time will tell if this new phase of the trial will show marked improvements in his symptoms.  It's just a wait and see game. And the fact of the matter is that there is no miracle cure for autism (YET!  I will keep hoping!) Until then, we will give him his medicine twice a day as prescribed, and pray that someday, somehow, this will help him or someone else.

***The big scary PET scan machine....he took it like a champ!****