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.....

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!

Tomato, Tomahto

I consider myself to be somewhat of an infant when it comes to this parenting a child with autism thing...er, wait, maybe it's supposed to be parenting an autistic child? Many times, in my research and reading, I have come across this internal debate within the special needs community as to what the proper terminology actually is when referring to one who possesses traits of autism. (is this okay to say?)

I must admit, in the beginning, just after receiving the diagnosis, semantics was the least of my concerns.  However, recently (probably because I am reading more blogs, and fewer medically based articles) I have encountered this little head-butting debate in more than one arena, and have actually started to consider the implications and the arguments behind it.  Now, for those of you who are autism parents reading this, I'm sure this little word war is nothing new to you. And though it is also not necessarily new to me either, I recently began paying more attention to this discourse because, well, I WRITE A BLOG!   I began to wonder if between my Facebook posts, my conversations, and my published blog posts,  I have ever really just pissed someone off because of my choice of words when referring to my son's autism, since I basically use both phrases ("has autism" or "is autistic") interchangeably. And believe me, I have read some pretty heated arguments and know that many people feel as strongly and polarized about this topic as they do about our current presidential candidates. I will never know who I may have offended, but I'm curious all the same.

At any rate, here is my take on the subject, which I plan never to discuss again because I find it to be pretty unimportant and insignificant in the grand scheme of things that autism parents already deal with. But here goes....

Here is a (very) basic synopsis of the debate at hand:

Some believe that by saying that someone "is autistic," it defines and labels them as being ONLY that- autistic.  Further, they claim that by describing my son, for example, to someone as "being autistic" rather than as  "having autism,"  my word choice will actually influence the way people perceive and respond to him.  It is suggested that if you place the word "autistic" before the person, that it becomes a label, vs. if you place it after the person, it then becomes merely a trait of that person.  And to be fair, this is an overly-simplified explanation of the debate.  I've read some articles and posts that have gone into much more specific detail about the  implications of how one chooses his or her words when referencing autism. And frankly, these articles and posts practically put me to sleep once my head stopped spinning from trying to decipher exactly what the heck points they were trying to make! You truly need to be an English major just to comprehend the technicalities of some of these arguments.  Kudos to those who have the time to scrutinize the English language to such depths, but you will not find me hovering over a grammar text book to check your work.

Despite the likely never-ending debate, the bottom line to me is this:  It matters not how we interchange these terms.  If you mention the word "autistic" or "autism" to describe someone, whether before or after the person's name or appropriate pro-noun,  I believe that people who are outside of this minority community that has been touched by autism, have already formed (or not) their opinions based on what they have or haven't read,  or have and haven't been exposed to.

If my son has a melt-down in the middle of the grocery store in front of someone who has no clue about autism, and they react by giving me that awful, judgmental "you-suck-as-a-parent-control-your-kid" stare, do you really think that if I walked up to them and said, "Just so you know, he has autism" it would make any difference to them and how they respond to us if I instead said "Just so you know, he is autistic?" I think not.  I mean, if the person is ignorant, the person is ignorant.

As a parallel,  if I share with someone, for example, that my cousin "is diabetic" rather than "has diabetes," I don't think it makes a bit of difference in how someone responds to my cousin either. Their response is based on what they know about the condition, and not how I choose my verbiage.  If one understands what diabetes is, he or she likely isn't going to offer my cousin (who is fictitious, by the way) a huge piece of chocolate cake upon our first visit to their house.  However, if he or she has no clue what diabetes is, that person may very well, to be polite, offer a sugary snack to my cousin, unaware that this food choice may not be something in which my cousin may indulge.    And further,  the fact that I may describe my cousin as "being diabetic" by no means implies that he is diabetic and nothing more.  This line of thought seems absurd to me, because if I use any adjective to describe anyone, (e.g. "He is hilarious") this does not imply that he is not also sensitive, kind, or possibly a complete jerk.  It takes more than one word to define any person.

Thus, I feel it is the same with autism. One word does not define any person, EVER.

More importantly, regardless of which way I choose to share this information about my son and whatever the circumstance,  the fact is that arguing over sentence structure is simply not productive. Why not, instead of debating with others about how to refer to a person with autism, use that opportunity to instead educate someone further about what autism can be like for the child who is struggling, the adult who has overcome, or family who is tirelessly supporting that individual?

Perhaps I will develop a preference for a specific "terminology" as I grow out of my infancy of being an Autism-mommy, as I have actually read that some autistic adults do have their own preferences of semantics (which consequently all vary from person to person....) But for now, I think it is a silly discussion to devote time to, given all that we, in the autism community, have on our plates. (And as such, this will be the only time I ever address this in my blog)

To each his own, and I am certainly not suggesting that people are not entitled to their opinions. My point, however, is that for ME, it makes not a bit of difference in our world, and I will continue to refer to my awesome, funny, and brilliant son as also being "autistic," or as "having autism," depending on how it best fits into my sentence.  And for this, I will not apologize.

Fifteen Things from My Head to Yours

I will refer to this as a mini-post, because generally I have a specific topic to discuss. However, in the interest of attempting to overcome a short bout of writer's block, I decided to just do a little list of random things about me (which I started several days ago,) and things that I think about from time to time.  Maybe not a Pulitzer Prize winner, this one, but a little glimpse into my head nonetheless.  Thanks for reading, even when I don't have something deeply profound to say! :-) And here you go....from my head to yours.....

1)  Just because I don't mention my other kiddos often in my blogs does not mean that I don't love and enjoy talking about them just as much as Nicholas. I just save that for other forums because my blog is a tool meant to raise awareness about raising a child with autism, and not just a family diary.

2) I am paranoid that my youngest son will be diagnosed with Autism. Though he is developing typically thus far, that "1-88" scares me, and so does the fact that it is more frequent in boys. I scrutinize every move he makes (or doesn't make...like the fact that he is not yet babbling at 9 1/2 months old--doc says not to worry....)  I attribute this behavior to what I like to think of as  "post-traumatic-Autism-Diagnosis-Syndrome"  What are ya gonna do?

3) Watching my 2 year old daughter start to talk, dance, play and be so animated gives me joy in a way that I cannot describe. I didn't know how fun watching a child develop their own little personalities could be so unbelievably awesome and exciting!

4) Watching my daughter start to talk, dance, play and be so animated twists the dagger that is permanently wedged in my heart, because it reminds me that my son cannot express himself in this same way, and he will always have to work harder than his siblings at this.

5) I talk to Nicholas as though he were  a typical four year old boy. It pains me every single time I ask him how his day at school was, or what he likes about his favorite music videos that he can't answer me. But I know he's in there, and I know he WANTS to tell me, damnit!!  And so I will ask until he does....

6) I am not always positive. Sometimes I just want to pull a blanket over my head and cry in a corner somewhere. And sometimes I do.

7) Kids' birthday parties are my nemesis.   If I'm quiet at these events, it's because I am torn with joy that my daughter can/will participate in the activities at hand, and sadness that my son is probably hanging out just "doing his thing" somewhere in the vicinity.

8) I feel grateful that I was blessed with my youngest son (who was a HUGE surprise!!) so that my daughter will have a sibling to play and interact with until we can unlock Nicholas from his isolated world.   I hate to admit this, but it is what it is.

9) I do not feel sorry for myself.  You shouldn't either.

10) I am addicted to reality Housewives of any city.  My ideal night is putting the kids to bed, cracking a bottle of wine, and losing myself in the trivial (usually) problems of the uber rich. (I qualify this with "usually, because I just learned that one of the Housewives of NJ's son was recently diagnosed with Autism....not so trivial after all.)

11)  I feel that I have become somewhat of a walking spokeswoman for Autism awareness, but I can't help myself.  Everyone deals differently, and my way is to absorb and regurgitate.  Sorry if I annoy you, but you don't have to listen. :-)

12) Most days, I enjoy my life.  I love my kids, my husband and my little family dynamic.  Yes, it's more complicated than many people's, but it's mine and I am embracing it!

13)  I've always dreamed of writing a book one day.  Now I think I might just have a topic....or two, or three....

14) I love making my kids laugh. I will do anything it takes, regardless of how ridiculous or silly I look to hear the sweet sounds of their little giggles! Nothing in the world makes me happier!

15) I am still trying to figure out what I want to be when I grow up.  I now see myself down the road helping other families in some capacity who are touched by Autism.  My passion for this has emerged thanks to my little man, and I think he's once again given me a new and improved perspective on life. Funny how things work out....

Is it Time for a Time Out?

Scene I:
Nicholas is very contently standing at his toddler-sized table that now is stationed in our living room as a semi-permanent eating/Ipad viewing area. This is where he spends most of his time now when he is home.  Avery, being the very energetic  and inquisitive two year old that she is, meanders over to the table to see what Nicholas is doing on his Ipad.  He's spelling....using his favorite app First Words Deluxe, and impressing us with his skills.  Avery now decides it's her turn to play on the Ipad.  She shoves her way in between Nicholas and the table, and takes over like she's Steve Job's technical assistant. Nicholas does not appreciate this one bit.  He grabs the shoulders of her Hello Kitty shirt, yanks her from the table, and in the process, knocks her to the ground. He then resumes his activity, completely unaware that this is unacceptable behavior. Crying ensues, as Avery gathers herself and her broken heart from the floor.  Mom, observing the entire ordeal, weighs the options of how to handle this.

Scene II:  Brody is on the move!  Crawling all over the living room, and getting into everything.  Nicholas, who is usually playing with his Ipad, has been given a "time out" from technology for a little while because, while mommy loves that we have found something that entertains AND teaches him, sometimes we all just need a breather from the constant noise of his favorite apps and music videos.  Brody finds himself entertained by a knee high activity center that I bought several months ago.  It has lights, music, and pieces to manipulate.  He's innocently playing away on the floor, when Nicholas barrels over, grabs his shoulders, and pushes him from his spot in front of the activity center onto the floor, and takes over the toy.  Once again, Mom watches the scene from across the room, unable to get there quickly enough to stop it before it happens, and then wonders, how I am to teach Nicholas that pushing his siblings to get what he thinks he needs right that second is NOT OK?

So, there you have it.  I have referenced in my blogs the "complexities" of raising a special needs child among his typically-developing peers, and this is a perfect example of what I'm talking about.   Not only do I lack personal experience in general with disciplining my children (because until now, we didn't have the "terrible twos" or anything of the like due to N's developmental delays, and as such, no real reason to "discipline" him) but I also will now start to experience these so-called "terrible twos" with my daughter in a setting where I know that I need to be consistent with discipline for her sake, but may not always be able to discipline N in the same way as her. And I imagine that this will become confusing for her (and eventually for Brody.)

Frankly, I'm not sure what I should realistically expect from N just yet in this area of behavior.  At his last evaluation for Autism, the results indicated that his cognitive abilities were around that of an 18 month old, and in some cases less.  Now, do I really believe this to be true?  Yes and no.  In terms of being able to spell, recognize words, match and sort, I know he is well above an 18 month old, and possibly even a typical 4 year old.  However, I don't know if he understands the concept of right and wrong, or even simpler, sharing.   As is typical for ASD kiddos, his impulses drive his behavior, and this is not really his fault, or meant by him to be bad behavior. He is wired differently. He is just responding to what his body and and mind tell him to do.  If he yanks Avery away from his Ipad, it's not because he is being stingy and doesn't want her to have his Ipad. It's because he was in the middle of spelling a word in his game, and he NEEDS to finish that word.

And as I sit here writing (and re-reading) this, I'm finding it extremely difficult to even explain to my readers in my own words why he behaves the way he does at times. So how am I to explain this to a two year old when she finally figures out that he is being treated differently than she is? Why is he not getting a time-out for pushing his brother, when she just got one for the same reason?  It's not to say that I will never punish him, but this chapter is only just beginning for us, and I don't have a guidebook (or even a friend) who can tell me how to approach punishments with an autistic toddler. I don't think he would even get it at this point.  I'm sure I'll be scouring the web for blogs, or books on the topic, but the fact of the matter is that he will likely NOT be treated the same as his younger peers, and one day, they will recognize this. They will start to ask questions, and they will start to have feelings about it.  I don't know if they will grow to be loving and protective of their brother, or if they will be angry and resentful.  I can only hope as their mother that they feel as loved by me as they perceive that he is, and learn to have compassion for him and for each other.

These are the things I think about at night, and these are things that keep me awake into the wee hours of dawn at times.  I don't have the answers, and like the rest of this journey, I'm confident that I'll figure them out along the way.  But if you happen to have the Cliff's notes to this one, feel free to send them my way!

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!****