The New Year and The Old Me

So it's my first post of the New Year.  Every year feels like a fresh start to me, but this year feels a little different.  For the past four years (with a small break in between,)  our family has been in a constant state of evolution.  I haven't had a chance to catch my breath from three back to back pregnancies, three new babies,  and a couple of unexpected surgeries thrown in there.  Every time I have felt like we would finally start to get into a groove, some major life change occurred (namely, more children!)  It has been a wild, wild ride, and in the end I feel so very blessed to have all three of these little people around me.  At the same time, it has been a difficult four years of trying to manage with babies so close in age, unexpected health and pregnancy issues, autism stuff, and what felt like a complete loss of control of my life in general.  Every nook and cranny of my house went to shambles, I wasn't able to keep up with most projects that I started or wanted to start (this includes showers, because let's face it, with three little kids, this IS a project), and just basic communication with people outside of my immediate family was all but lost.  It has just been an enormous amount of work to keep up with, and somewhere along the way I lost a big part of myself. 

Last night, while browsing through last year's photos, I was shocked to see that it was only this time last year when Nicholas started spelling with his blocks.   And this time last year, Avery was not even talking yet.  And this time last year, Brody was a mere 1 week old who was waking every 2-3 hours to eat.   It seems so long ago to me already, because all three of them have developed so much in this past year, and SO quickly!  I have not been accustomed to how rapidly young children grow and change, because with Nicholas, everything has just taken eons longer than with my neuro-typical children.  However, THIS year, with the help of his teachers/therapists, and with the tremendous amount of work that he has done in his new-found ABA therapy, I actually can say, and truly feel for the first time that he has made enormous (and tangible) gains compared to where we were at this time in 2012.  He has begun to follow many simple directions, sign for a few key items, attempt to do stairs on his own, climb into the van and into his car seat, use a spoon to eat his own food, and just in the past two weeks, has even begun to potty train!!  Just writing all of that out amazes me, and I'm sure there are lots of other little things (oh yeah, like sleeping in a toddler bed) that I forgot to mention! He is truly gaining some long-sought-after (by me, and probably by him) independence that at times I can honestly say I wasn't sure would ever happen until much, much later. 

And little Avery....she is growing like a weed!  She has begun talking in sentences, pretend playing, helping me fetch things around the house, cleaning up her toys (ok, not very often or well, but she is trying!) and even she is taking an interest in potty training!  She is so sweet, loves to cuddle with me, play any kind of game I propose, and the best part is that she tells me, "I 'yuv' you mommy!"  all of the time.  Do you know how long I've waited to hear those words???? It melts my heart every time, and I will never, ever get tired of hearing it!  She made my YEAR with that little addition to her vocabulary!

Oh and then there's Brody....my crazy, sensitive, silly Brody.  He has been such a blessing to have, and every day that he smiles at me, I think of how lucky I am that he's here on this earth with us.  Despite the fact that his first year was a little tough as far as the sleeping goes, and for me, a little anxiety-filled because I have been so on edge about whether or not he will have fallen on the spectrum at some point, (because I can't help it....statistics are a scary thing....) I think we have finally turned a corner.  The little booger decided to make me sweat it a bit by not babbling for quite some time, but he's finally begun to babble up a storm at me daily.  He laughs, giggles, tries to imitate me, "brushes his hair" with the brush, and just in the past month, he has begun walking!  He's my little bruiser who loves to climb all over furniture, and dive head first off of it.  He's already had a giant bruise on his cheek, and a bloody nose along the way, so I can only guess what's in store for me as he grows older and more "boy-ish!"  (though Avery actually lost a front tooth this year due to a little slip and fall accident in the kitchen, so I'm sure our future of injuries has less to do with being a boy than I would like to think) :-)

All of this to say that I have had a blast this past year watching all three of my kids grow in their own ways, and into their own stages.  Along the way, I've been exasperated from time to time, exhausted many times, but totally in love all of the time.  

This year, I look forward to (hopefully) "settling in" a little more as a family, and trying to find at least a little part of the old ME again.  I focus all of my time and energy on the kids, of which I'd have no other way at their ages obviously, but I think this year will be a little easier to spend even just a teeny, tiny fraction more time focusing on me.   Brody is finally sleeping at night (I say that with a slight trace of hesitancy in my voice, as this is VERY new, and I'm not entirely convinced...)  Avery is  at that super-fun age, and also quite a bit more independent than I knew a two year old could be, and Nicholas is going to do some BIG things this year....I know it!  I'm starting this year in a positive frame of mind, and my goal (because I don't make resolutions) is to focus on getting life back in order.  I've already started this process, when it comes to the house, cleaning, organizing, etc. (because holy cow can you accumulate a lot of crap when you have three kids in four years!) But I also want to regain some order when it comes to me!  I need to pay more attention to myself this year, find/make time to shower, paint my nails, read a book, and exercise regularly. Doing my hair is pushing it, but I could always slap on a little make-up at least!  I need to make my own doctors appointments that I always put off because my kids' appointments always come first.  I need to talk to my friends from time to time, even if this means hiding in a closet somewhere so I can hear what they are trying to say!  I need to clear out the clutter in my life, so that I can breathe again. This will be my journey and focus this year, and I hope yours is the 2013 that you hope it will be!  Happy New Year everyone! 

I.E.Phew! Part III

So, the saga continues.....our trial 60 day period has elapsed (see I.E.Phew Part II) and the time has come (and gone) for a reassessment of Nicholas' classroom situation.  As this time has passed, Nicholas has adjusted well to his new schedule of 2 1/2 hours of instruction in the morning at pre-school, and another 2 1/2 hours of instruction at his ABA center.  And in this time, he has made amazing progress (of which I have posted several videos of during the course of this 60 days.)

At the last I.E.P meeting, his new goals for school were set based on the rapid amount of progress that he had made during the summer months using an ABA approach.  At that time, he was only receiving this intervention 2 days a week, for 2.5 hours a day.  Beginning in September, this jumped to 5 days a week for 2.5 hours a day (plus his pre-school time as well.)  We did our best to create appropriate and measurable goals based on his very quick progress over the summer, but none of us could have ever predicted how much MORE quickly he would progress with five days of therapy vs. only two.  All of this is good news if you look at it from the perspective of Nicholas' progress.  We are ALL thrilled that he has been able to learn so many new skills in such a short amount of time, and not only that, but he has given us HUGE insight into his cognitive abilities based on the receptive language skills that he has demonstrated in therapy.  This is obviously something to celebrate!  But, then again, is it?

Here is the ultimate problem.  It is fabulous that Nicholas has made such great progress over the last 60 days, and further, it is great that he has not only met, but exceeded most of his goals (mainly speech related) that were set in his IEP in the fall. However, it is very clear to me, based on the limited amount of progress made in the classroom before having started ABA therapy, that his progress has much more to do with what happens in the 2 1/2  hours per day of ABA vs. the 2 1/2 hours per day of instruction in the classroom.  Now, this sounds like a negative statement towards the school staff, and that is not at all how it is intended. He has a fantastic teacher, and his therapists are fabulous and they all love and support him to a point that I never would have anticipated in a school setting. (Well, in fairness, I had no idea what to have expected since he's my first in school, but I think they are awesome!)  However, despite this, there are several other differently-abled kids in this classroom, and simply too many to allow the kind of consistent, daily, one-on-one instruction that best suits Nicholas' learning style.  Therefore, at the end of this 60 day trial, I have still requested that it be considered that he be moved into a "more restrictive" (a bad word in the public education system) classroom that is geared specifically towards students who have ASD, and also one that is a full day vs. 2 1/2 hours per day.  Sounds like a pretty reasonable request, right?  Well, it is and it isn't.  That's where it gets complicated.

Much to my surprise, the team and the "powers-that-be" (after another 2 1/2 hour IEP meeting) have agreed to entertain my request.  This is a  HUGE deal....why? Because in our case, it means sending Nicholas to an entirely different school district since our current district no longer houses an ASD pre-school program. For a district to consider this is a complicated matter, because they are, in a sense. admitting or conceding to the fact that they do not have the appropriate resources available for him, are not meeting his needs in their current available setting, and also potentially taking on an additional financial responsibility in order to send him to an out of district location.

In our case, there are differences in opinion regarding whether or not his needs are being met in the classroom.  After all, he IS meeting/exceeding his IEP goals, which would indicate that he is receiving the services and attention that he requires in his current classroom setting to learn. On paper, this sounds about right, and also makes it extremely difficult (both financially and politically) for a district to even consider this process of evaluation for sending him to a MORE restrictive environment.  However, my son is very fortunate to have educators/therapists who are truly looking out for his best interests.  The ones who see and work with him on a daily basis, despite what this looks like on paper (and not for lack of effort on their part, or even lack of some legitimate progress due directly to their hard work) have still been willing to say that his achievements, while great in the last 60 days, may have more to do with carry-over from his private therapy than from their own influence.  Think about how difficult this would be to come forward as an educator and say to your peers, to your supervisor, and to a parent... that you may just be falling short in some areas that could really benefit a child.  This is basically admitting failure, which is not at all how I feel about this team who is working with him.  They have not failed him, but unfortunately have only been given a limited amount of time/resources to work with him, and  for this reason are willing to admit that this may not be his best scenario, and one that will actually maximize his potential as a student now, and in the future.

As Nicholas' Mom, I am so grateful that they have stepped up on his behalf to imply such a thing, simply because they really believe that he could make more progress in a different setting.  I recognize, as a parent, that this is an extremely difficult position for the school to be in, as well as for the individuals who care for him daily.  As I've said before, as a parent of a special needs kiddo,  you hear horror stories about how difficult it is to advocate for your child in the school system to be sure that his or her potential is maximized in the programming that has been decided upon for them (correction: that I agree to in an IEP meeting.)  And my reality  is unfortunately living up to the fact that this is going to be difficult.  It is still stressful, and a struggle, and frustrating when you think about how much time must be put into this one aspect of his being.  However, I fully recognize how lucky we are that he has a team of educators behind him who truly care about his well-being, and his potential to learn.  They know him, I know him, and we all know where he needs to be.

That said, at the end of the day, just because this option has graciously been considered,  it does not guarantee that he will end up where I would love to see him.  There is yet another process ensuing (I will surely follow up with IEPhew: Part IV soon enough....ugh...) and we must meet yet another set of criteria, and have another discussion in order to make this happen. At this point, we are waiting for the potential school to do an evaluation of Nicholas in his current classroom, and make a decision as to whether or not they feel he would be a good fit for their program.

Whatever the case, it is out of my hands for the time being, and I feel that our district is doing the right thing by considering this as an option for him.  I know how I want this to end, and I also know that it may not end the way I hope.  Until then, I can only put my faith in the fact that the educators who will make these decisions will truly base them on their expertise, and what they feel is the best thing for my child.  And until then, I will wait.....


This just in:   That was a much too depressing note to end on, so I must share this completely unrelated video with my readers.  If you are a FB friend of mine, you may have seen this already, so I apologize for the re-play, but this is just too good not to share on my blog.

As I said on my FB status two days ago:  "This warms my heart and breaks it at the same time....I left the room for a few minutes and came back to find this happening...."    This is my sweet, sweet two year old with my very Au-some 4 year old.....if this doesn't make your heart burst, nothing will.....Love her!

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!