Crystal Ball

 I had an interesting experience recently.  While playing at the park with my "Princess Avery" and her baby brother one sunny afternoon when Nicholas was at school, I noticed a young man, maybe 15 or so, who was wandering across the grassy area near the playground structure.  It struck me as odd, only because I thought he should probably be in school during this time, wondered why he wasn't,  and for a brief second, a red flag immediately went up because only a few seconds after I glanced at him, he very deliberately paced over to the swings just near where my two children and I were playing together.   What happened next, was unexpected, and essentially became a revelation about how autism has changed my life, and my thought processes in general.

The initial "red flag" that immediately had risen when this young man began to approach us was due to the fact that in this day and age, there are so many stories of random crime and violence against children that you simply cannot be too careful or alert as a parent.  His deliberate physical approach, and the fact that I thought it odd that he was not in school stirred my immediate reaction of thinking that perhaps this person could be a potential threat to my children. Admittedly, it’s a horrible and judgemental first reaction to any human being, but unfortunately, society has molded my brain to default to this type of thinking in certain situations.  However, in less than a split second of having had this thought, I immediately calmed and had a thought that never would have occurred to me 5 years ago…or even 2 years ago.  As I glanced over at him during  his approach, and then observed his very focused intent to zero in and land himself in the swing next to us,  I very quickly shifted mental gears and though to myself, “I bet this kid is on the spectrum.”   It’s probably not the most common next logical thought that the average person would have,  but right then, I realized that autism has changed the way I see things. The man sitting on the street corner talking to himself, the person at the train station yelling at no one, or the anti-social guy in the grocery store line who seems rude but is very quiet, I tend to give the benefit of the doubt nowadays rather than thinking they are some mentally deranged person.  And I say it this way, because this might have been the way I would have internally judged them before.  I'm not proud of that, but it is what it is.  Live and learn.  Maybe they aren't on the spectrum per say, but there is just as much a chance that some of these people have legitimate, diagnostic issues vs. just being strung out on drugs as I once might have assumed.  Anyway, having said that,  I shifted very quickly from “momma bear” mode over my children, to “momma bear” mode over this young man because I could tell by the way he was swinging so fast and so high and enjoying the experience SO immensely, that I just knew that I had to be right about him.  So, I began observing him a bit.  For me, It’s not an every day occurrence to meet an older child with Autism, and as a parent of a toddler with Autism, I often wonder if I could learn anything about what our family's  future with Autism might look like in talking to older Autistic adults, or their families, and hearing their stories from along the way,  and from their present day.  And now, here it was!  The the opportunity was staring me right in the face!!

As I observed him for a few moments, he began to chant something over and over. I couldn't make it out, but whatever it was made him smile.  And then it made me smile.  I could tell that he did not want to make eye contact with me, but he did appear to  try, so I said hello to him, knowing that he probably would not respond in a "socially appropriate" way, if he responded at all.  But I wanted to make sure that he knew that he was in good company, not alone at the park, and that he had been "noticed" in a positive way.   He, as predicted, didn't respond, and I continued to push Avery on the swings until she wanted to go and play somewhere else. As she ran across the playground, this young man began to laugh out loud at her.  Something about her cute, klutzy toddler gait was funny to him, and again, I smiled thinking of Nicholas and some of the random things that make him laugh. (Behr paint commercials, certain scenes from Toy Story, The Strawberry Shake song.....)  I said something else to him at that point (of which I don't recall) but basically to acknowledge that I had heard his laughter  

As I finally  walked away to follow Avery,  it occurred to me that he was alone. Where was his parent? Did he walk here from somewhere? Is someone looking for him?


A bit later, Avery and I returned to the swings, where he still remained, happily swinging away.  I attempted to interact and acknowledge him a couple of times, and then eventually, I heard a voice yell to him "Daniel (a false name to protect the innocent, of course!), that is too high. You need to slow down a bit!"  This woman had been sitting on a bench in the distance all the while and I had not seen her.  I decided, after a few more moments passed, to approach her.  By this time, Avery had made a little friend, (which as a side note,  was so awesome for me to witness, because peer interaction is not something I take for granted, and she is REALLY beginning to blossom in this area. So cute and cool to see as a parent!) and Brody was following them both around like a little puppy.   I figured I had a fighting chance to have a real conversation with another adult...so,  I sat down next to her, and said hello.  I told her that I hoped that she didn't mind my asking, but was her son on the spectrum?  To this, she gave me an odd expression, not because I asked about his diagnosis, but because he was, in fact, not her son.  She was his caregiver, and had been working with him and his family on a daily basis for about 4 years now.  As we began getting more involved in conversation, she began sharing with me that his family situation,  a sad one of which I will suffice to say involved a broken home, and estranged siblings, and essentially,  this is how she came to be part of the family.  She stays with him during the day, helps him with whatever he needs, gets him to and from school, therapies, appointments, etc while his father works.   Then, of course, as "Clueless Warrior Mom with Autistic Toddler,"  I wanted to know all about him. What are his "symptoms?"  When did he learn to talk? How "functional" is he now?  Will he be able to live on his own some day from what they can tell now?? In my mind, this woman held some sort of crystal ball that could be my future...Nicholas' future....my family's future.  I was curious about his daily routine, his school life, his social life, when he started speaking, what medications and doctors had they seen, and, well, just about any nugget of insight or information that she could provide that would prepare me for the path we are treading.

Most of these questions, I never even got to ask. In fact, here is what I took away from our short but thought provoking exchange....he is more accurate than a Garmin GPS when it comes to directions. She said it is impossible to get lost when she is with him.  He requires and follows an extremely detailed and regimented daily schedule, which is written out for him at the beginning of each and every week.  She posts it for him at home, all seven days, every activity of every day (Wake up, Brush Teeth, Eat Breakfast, Go to school...etc. etc.) and after reading it only one time, he will have it memorized.  She told me that they used to post the entire month for him, but it became too overwhelming because he would memorize and recite the entire 28, 30, or 31 days of said month, which, as you can imagine, could take up a pretty large chunk of one's time that could potentially be put to better use. As a matter of fact, he stopped by the table at one point while we were having our discussion, and I had the distinct pleasure of hearing him do just that.  From beginning to end, he rattled off every move he would make, every place he would go,  was extremely diligent about getting it right, correcting himself if he made a mistake, or adding an extra detail or two from time to time when he deemed it necessary (for example, the calendar said dinner at Nana's house on Sunday, and I was informed later that he added in the "and Uncle Jim" because uncle Jim recently moved in, and his name SHOULD have been on the calendar entry for this activity but was not.)

This was so fascinating to me.  Let's face it, I can barely remember what I have already done the day before, let alone sketching a months worth of appointments and activities into my brain in advance.     I could  tell how so very proud of himself he was for having given a flawless recitation of his schedule, and I really fell in love with this kid at that moment. But something else happened in that moment....back to my revelation I mentioned about 500 words ago....  Having met him, and spoken with this woman, while still interesting and a memorable experience for me, does not give me any more insight into my future than just asking a random person on the street.  I occurred to me that what she had told me about him, and what my experience with Daniel had been, was just that.....about Daniel.  It was not Nicholas. I was not, at all,  looking at my "son's future." I was simply looking at Daniel's "now."

 I don't know if it's the same for other autism (or any special needs) parents of young children, but for me, there is this constant and underlying obsession to find out how this will all "pan out" when he gets older.  Will he speak? Will he go to college?  Will he live on his own?  Will his potential be realized?  Will he be happy as an adult?  Am I doing enough to make sure that it is?  And as much as meeting other parents of older autistic children/young adults may still be valuable to me in terms of simply knowing their experiences and what has worked or not for them, my child is my child.

All of my children are unique in their own ways, autism or not, and I can't expect to know the future for ANY of them. How silly and blind of me to think otherwise.  How limiting of me to try and make such  a narrow-minded  comparison of my son's future based on someone elses present.  The world is our oyster, and we've only just begun down this path.  So much can and will change in this world over the span of our lives, and it is simply not productive to even think about the future in that capacity right now. That's not to say that I won't from time to time....it is inevitable and I'm only human.  But I will try to spend less time doing this because this experience reminded me that no matter what your circumstance, you just have to take life as it comes.  There are no guarantees, good, bad or indifferent for anyone in my life,  and the sooner I stop trying to find some kind of crystal ball into our future, the closer to acceptance of autism joining our family I will be. I'm still not there, and I still wish Autism would not have knocked on my family's door, but it did, and I was just remided that I need to embrace it instead of trying to figure it out, or minimize it.


 If you are an autism parent reading this, or really anyone struggling with any situation like this, maybe you have already learned this lesson, but I have only just arrived here in this moment.   And the more experiences I have mirroring the one I had with this woman and  Daniel, the closer I hope to get to finding my peace with this.  I hope you find or have found yours too.  I suppose life would be less exciting if we already knew what was going to happen, so I'm just going to try my best to stay away from crystal balls, and let the dice fall as they may.

My Summer Vacation

It's time to get back to this blogging thing.  I guess I took a little vacation for the summer.  I'm not sure why I stopped, but what I am sure of, is that there is a direct correlation between my sanity and my sharing, so I've decided that it's time to get back to it. I think it would be a little overwhelming to begin by recapping all that has occurred between my last post and now (and likely boring for you, my beloved readers)  so I'll just give a brief summary of our current state of affairs, and limiting it to what might actually interest you.

First, Nicholas began his pre-summer-vacation weeks in his new school. He made a seemingly very smooth transition, and has seemed happy upon his return home each day. I was worried about the long bus ride alone, but it doesn't seem to bother him, and when I ask him about his school day, he usually smiles when I recap what I read in his communication book.  That's the best I could hope for after him leaving a place that was so familiar to him to begin with a whole new room of people and faces so suddenly (for him anyway....)

 Within a couple of weeks of beginning in his new class, he began using his PECS book consistently in the classroom.  For those who are unfamiliar, PECS stands for Picture Exchange Communication System, and is simply a little binder with pictures attached by Velcro to it which allows him to make requests for items/activities by tearing off a picture and handing it to the person asking the question.  We have attempted this method, or variations of with him at different times in his development and learning, but it just wasn't happening consistently for him. He simply wasn't ready, or wasn't exposed to the concept often enough to realize that this could be beneficial to him in terms of getting his basic needs met.   However, now he is more ready, he has access to the book/method all day at school, and it is much more easily carried over at home as a result of the fact that I am not the one trying to implement it 90% of the time, but only trying to reinforce it. . In fact, I'm still not great at using the book consistently because I just know what he wants and forget to require him ask, but it's been a learning process for all of us, and I'm getting better at letting go a little bit, and not worrying that he will starve to death if I don't just shove milk and bites of macaroni and cheese in his face at our specified meal times.  Instead, I will show him the book, ask him what (if anything) he would like, and I don't (always)  feel bad in not offering him something if he doesn't make the request.  If he can use this requesting skill with other people in other environments, he can do it with me too.  He needs to learn that things won't always be handed to him with no effort on his part.   In fact, this is perhaps one of the greatest things I have taken from this entire situation of changing schools and having a different routine.....giving him independence, and creating new and different expectations for him.  I am only now realizing that Nicholas is not incapable of many of the things that we have been struggling with for so long (like getting him to drink from something other than an infant's bottle.) but that I have not been expecting enough of him.  

His behaviors, or lack therof,  while some legitimately limited or affected by his cerebral palsy and/or autism, are also influenced by the way I and others treat him.  And others treat him based on what the expert, in  his case, his mommy, tell them he is capable of. After all, I, until now, have been around him more than anyone on any given day, and should know him better than most.   Everyone else has had him for snip its of his days, or his weeks, and by no fault of their own, have been very respectful of what I, his mother, have had to say in terms of what he can/cannot or will/will not do.  And they should be...I know him best!  But, in the end, Autistic behavior is not my area of expertise. That is a lot of pressure on me, when it really comes down to it. For the first time I'm realizing that I play a major role on his development, or lacktherof,  and one that I am not qualified to play in many ways.   I am still a mommy, not a therapist.   It has become very clear to me over the past few months that I am not pushing him hard enough. I am not letting him learn to do things on his own.  And let me tell ya, this kid is SMART and likely PREFERS it this way.  Who wouldn't??? Wouldn't YOU like someone to spoon feed you while you browse Pinterest or ESPN to begin your day?? I wouldn't mind.....just sayin'....

 Now, I am not implying that I am failing him as a mother in any way.  We all live and learn. And there is a unique complexity to the situation because he is unable to express himself in a verbal way in which I can understand him, therefore making it difficult to decipher when I am being stern and motherly vs. being cruel.  However, when my two year old says she doesn't want to take a bite of her food until she gets a cookie, I don't just let her have the cookie because she says she wants it.  She may be persistent, and put up a fight, maybe even throw an all out tantrum.  But eventually, she knows that she has to do what mommy says because I am teaching her about discipline and expectation, not because I am being cruel to her by making her eat a piece of chicken.  

However, because of  Nicholas' sensory and other physical issues, take eating just as one small example, I have often not pushed him to, hold his own spoon, or drink from a sippy cup, or try a new texture when he puts up a fight, or eat a few bites  of food first without getting to play with his Ipad during the meal.  Why?  Because I felt like I was being mean or unfair to him.  But guess what I've figured out recently? This kid is smarter than the average bear, and is very capable of learning how to do all of these things.   But recently, I've grown a little and decided to push myself to push him. Don't get me wrong...it's very difficult for me at times, and probably somewhere along the line, I've pushed too hard, or pushed at the wrong time, or haven't pushed enough.  But don't we all do that as parents at some point or another? Autism or not??  I guess the point is that yes, while he has legitimate limitations, I am starting to learn that I am not doing him any favors by catering to all of them all of the time.  Part of this liberating thought process change for me has come about because he now has professionals working with him all day on the things that have been too emotionally charged for me (like potentially starving my child, or forcing him to do things he isn't physically capable of...so I thought.)  Another part is that he is, in fact, getting older, and as I see my daughter's maturity  level begin to unfold at the young age of 2 1/2, I finally have a real relative comparison of which to compare Nicholas' potential at now age 4 1/2.  

 The result of this realization?  Nicholas is now very capable (still with some difficulty due to legitimate motor planning issues) to eat his own meals with a spoon. While we are not 100% successful 100% of the time with this new found skill (after all, it takes practice to make perfect.) But now that he knows that eating on his own is expected of him (MOST of the time...disclaimer for when we are in a hurry or having a rough moment) his efforts to do so have improved drastically.   He is also drinking from a sippy cup, albeit it has to be the exact same sippy cup each time (sensory, sensory, sensory) but dammit, it's better than an Evenflow Comfi-Grip bottle that shatters every time he drops one on our tile kitchen floor! (Don't get me started...I should have bought stock in the company four years ago...I think I've kept them in business until now.  But I digress....)  He has begun to initiate requesting milk or food using his PECS book because I don't automatically offer these things to him when I assume he must want it or be ready for it. Not always, but as often as I can remember to do so, I offer instead, his PECS book to give him the opportunity to ask me for what he wants. I give him an opportunity for his own independence.  This is largely in part because I know he is capable of this at school, so why shouldn't he be exhibiting this same skill at home??  

Overall, I don't believe that the new school setting is some kind of miracle setting for him.On the contrary, I never did believe it would be.  But I will say that it is living up to my expectations in terms of giving him the repetition and time he requires in order to learn important life skills, and it is also giving me the empowerment to feel strong enough reinforce these things when he is home with me.  It has been a win-win for us so far, and I'm thrilled for him to begin again full time in the fall (though, he has not really stopped, and is in school this summer three half days a week) to continue to work on these skills.  It has really been a blessing for us, and he is coming such a long way.  He only had a short 6 weeks in the new classroom environment before the school year ended for the summer, and I can't wait to see what happens after an entire year of opportunites in this setting beginning this September. 

As for the rest of the family, Avery is potty training, and Brody is training to be  a future linebacker for some pro football team...or something like that.  They are growing like weeds, both individually, and together as siblings. Both of them have developed such distinct personalities, and are also really beginning to notice and pay attention to their big brother (and vice-versa.)  I have really enjoyed watching them develop over the past few months, and at many points in the past,  as I have shared in my blog,  I have felt trepidation that their lives would be negatively impacted by the time and effort that I put forth with Nicholas and all of his special needs...fear that this would somehow take away from their well-being.  However, they are now showing me signs of something I had never considered....that they will help me look out for him as well, and perhaps even be positively influenced by their big brother.    Example: DVD in car stops playing, I am driving, Nicholas begins whining. I have no idea why.   Avery then informs me that "Nicholas wants Yo Gabba Gabba and it went away!"  Hmmm, the DVD stopped.  Good to know!   Thanks Little Pea! (as I lovingly refer to her.)  Often times, she seemingly speaks for him when she informs me that "Nicky wants oatmeal momma!" when I know that he, in fact, does want some breakfast and therfore is making his noises to let me know.  And even Brody, as an 18 month old who is seriously so fearless and gives me mild heart attacks daily with his physical feats around the house (like climbing onto the kitchen island by scaling the less than sturdy stools that sit upon my not so soft tile floors)  will hear Nicholas make his noises,  and attempt to bring him his sippy cup of milk, or his Ipad as if he knows that it will calm him.  They are learning a way of communicating without using words, and it's as if it is  instinctive for them. They are learning compassion already, at such a young age.  Somehow, it's just normal for them, and it is so heart warming to see them begin to interact with their brother, who, by the way, is beginning to tolerate them in his space a bit more.  It goes both ways. 

Yes, the past few months have been a little crazy with new schedules, new activities, new routines,  and I have been focused on many things and nothing all at the same time (this will be another post!) but our new journey is well underway.   All of my babies are growing, and in many ways, so am I as a mommy.  I will try and do a better job of writing, not only because I hope to help others with my story, but because my sharing helps me as well. 

And as a closing note, I missed my own blog's first birthday back in May, but I wanted to thank you all for my over 7400 page views, and my over 160 Facebook followers! I know many of you have read, shared, or followed me over the course of the past year, and the support is so much appreciated!  Thanks for reading, and please pass my posts along if you ever feel they could be beneficial to someone you know!

Until next time.....

The Saga Ends, A New Chapter Begins

I have not written in a while.  I have needed some time to breathe, re-group, and revive.  But I am back!  If you follow my blog page, or my blog's Facebook page, you probably already know the fantastic  news that I have not been able to stop chattering about for weeks....Nicholas was FINALLY accepted and transferred to his new school!  I was just about to say that it was a long, hard-fought battle that we have finally won, but in the end, I suppose it wasn't really a battle as much as a marathon.  The process was long, tedious, time-consuming, emotionally and physically draining, but in the end, triumphant!

Nicholas started his new school following Easter break.  He has been in his new classroom now for a week and 2 days (who's counting??,) and in that time, my life is all but brand new.  It is very difficult to put into words what this change means for not only him, but for my entire family.  As I told his former district teachers/therapists/paras/administrators today in an email, this school accommodation is literally life-changing for us.  Each day, Nicholas boards the bus at about 8:30 am, and is transported to an ASD-specific pre-school room in a near-by excellent school district equipped with teachers and therapists who have specific training and experience for children on the spectrum. He is only the fourth child in the class (with a maximum allowance of six,) and there are, at minimum, three adults present at all times.  I have had the opportunity to meet the staff there twice now, and I have every confidence that they will have not only the capacity, but the expertise to help him maximize his potential, and more importantly, help him progress in a way that simply was not possible given the limited time he was able to spend in his old school. (of which I will say is also full of capable educators, but unfortunately limited on resources and time....still love those women! Always will!)  They will help him with feeding, dressing, potty training, life-skills, and of course all of the academic skills he should be working on prior to entering kindergarten (like holding a pencil/crayon, following directions, communicating with PECS consistently, etc.)   I could not be more thrilled to have this opportunity for him to be able to receive the attention that he not only requires, but deserves throughout the day.  As much as I'd like to say I could fill in the gap during his day if he remained in a half-day program for the rest of this, and then another year, I simply cannot.  His first week of school, and the past two days thus far, have been an easy transition it seems.  He comes home every day on the bus, around 4:25pm,  with a smile plastered on his face, and as much as I'd like to think that this beaming grin is reserved specifically because he missed me immensely, I think that it has more to do with the fact that he is just generally happier to have had so much focused attention from others throughout his day.  Only time will tell how significantly he progresses, but for now I am 100% satisfied that he is in the right environment for him, and that he will go nowhere but upwards from here.

As a residual benefit to this new set of circumstances, I am finally able to spend some quality time with my younger two children who so truly deserve this of me.  More often than not, in their short little lives thus far, I have been stressed out, busy preparing to load or unload my van with children to  make it on time to our next therapy appointment, or spending whatever extra time I could trying to give Nicholas the attention he so desperately needs to continue his progress.  I have not  had the luxury of really enjoying my youngest babies. It makes me sad when I think about it.  These days are so precious, especially when they are this young, and I have felt as though I have robbed them of their quality time with their mommy, and likewise, I have been robbed of my time with them.  This is no one's fault, but indeed, it is the constant internal mental battle of a special needs parent with multiple children....balance.

 However,  in the past week, we have had a new-found flexibility in our schedule to do things together that we otherwise and previously have not. If I'm being honest, I guess what I'm really saying is that I've finally had the ability and time to simply pay attention to them.  I have been so pre-occupied in the past several months with trying to polish my "armor" for this battle, prove my case for N's educational needs, and basically keep my head above water, that so many things have fallen through the cracks.  ( Should I mention that my utilities were shut off this week because I neglected to pay the bills for Lord knows how long??? Bills, schmills...who has time?? Naw...maybe I should leave that out....)  Anyway, the point is, this little marathon has taken its toll on my family in ways that I could never have imagined.  But for now, the race (this one anyway) is finally over.

This change for us, as a family,  is monumental. I am grateful that we have had this opportunity to let Nicholas shine in an environment that I hope will better suit his needs in the long run. As for little 'ole mom, the guilt I have felt every day since his ABA therapy sessions have ended, and my inability to "therapize" him throughout his now-barren afternoons as I constantly felt I should have been has finally subsided.  The guilt I have carried knowing that I have had to make a choice to focus on his future, versus finger painting or playing games with my younger two each day for so many months has also subsided.  My mind and my heart are in a better place than they were merely a few weeks ago.  Life seems do-able again.  I am enjoying my new days so much that I can't even believe that this is my actual reality.

One part of me feels guilty even saying that.  It's not that I don't miss Nicholas every minute that he is not with me, but I know that he is in a place where his needs can be met in a way that even I, his own mother, cannot measure up.  That's a heavy burden to bear, but that burden is lifted significantly knowing that I at least had the ability to stand up for him, and acquire for him what I truly feel he needs.  I guess I can finally say that I feel proud!  I did it myself...without an advocate, without a lawyer... and without hanging myself first!  (But not without some behavioral out cryings that have warranted the need for professional help...we are all human in the end, let's face it!)  And, of course, this would be an appropriate place to insert the fact that I have had the loving support of my husband along the way. He may not have been on the front lines of this battle, but he listened, gave feedback, empathized, dealt with my "coping mechanisms," mood-swings,  and essentially dropped everything when I needed him to along the way. He too, has been greatly affected by this process, and has held it together when I have not always been able to.  Not everyone in my position has this kind of support in their back pocket, and I could not have gotten through this without him.

So, today, I feel good.  I feel great!  Today, in particular, was a fantastic day!  The sun was shining, the birds were chirping, and I found myself energetic enough to take my "Littles" for a walk this afternoon.  As we strolled down the road, the kids were happy and entertained just looking at all of the surroundings from the comfort of their fancy stroller that I have neglected to use for the past  two summers. I knew Nicholas was in school, learning things that I could not possibly find the time to teach him.   We were not rushed, and had nowhere to be at any particular time.  I felt happy and content for the first time in a very long time.

 As we meandered down the road,  I found myself thinking to myself that these are the moments and the type of joy , that before becoming a parent,  I had always imagined. And for a split second, I felt a twinge of guilt for even allowing this thought to cross my mind.   But only a brief moment later, I found myself also thinking that Nicholas, and all of the struggles that we face together,  brings me moments and joy that I could have never imagined before being a parent.  How lucky am I to have both?

IEPhew!!! The Conclusion.....I Hope!!

IEPhew!!! is RIGHT!!!  For those who haven't already seen my rantings followed by my emphatically excited posts on Facebook this week, we were informed today (AGAIN) that Nicholas has been accepted into the center-based ASD pre-school!!!!

I actually had anticipated making this announcement via my blog two weeks ago when we were informed the first time, but something in my gut told me to wait until the IEP meeting had taken place.  Even after we visited the classroom, met the teacher, and learned all I needed to know about the setting to know that it was perfect for him (or at least better for him) I was still hesitant to tell anyone. 

Sure enough,  the IEP meeting was scheduled for last Thursday. I had my Sunday-best laid out, hubby was planning to come home early from work to watch the babies, and I even washed my hair in anticipation of being in public!! But then, a mere 12 hours before the meeting, I received a call that sent me over my edge-of-advocacy.  Apparently, the receiving district, due to a "personnel change," was now questioning the referral of my son to their program, and whether or not he was a good fit for their classroom.  Why? Because of the fact that he had been meeting his goals on the current IEP (among other reasons, of which, I am frankly too tired to detail here.)   REALLY????  Didn't we already go through this once already??? (see IEPhew I, II and III...I'm too tired to even insert the links!)  So, to keep this post to a minimum and to keep my readers awake, (because, believe me, I'd love to re-hash all of the gory details of how this all went down so that you could sigh and gasp in horror along with my story)  I will suffice to say that it has been a stressful week for me. 

I spent hours this week "building my case" as a lawyer might do in a court hearing, while my children spent entirely too much time watching Tinkerbell, Yo-Gabba Gabba, playing Ipad games, eating from the floor, and wearing wet clothes and soggy diapers.   I spent additional hours detailing my "case" in writing, because anyone who knows anything about the processes pertaining to special ed law knows that if it's not in writing, it didn't happen.  (Hmmm, if we used  this line of thinking in a court of law for criminal cases, imagine what kind of shape we'd be in as a country! Just sayin'.....)

Anyway, I had literally just said to my hubby the morning of said call how excited I was to get Mr. Nicholas into this program so that his time is spent wisely throughout the day, and so that perhaps I can indulge my younger two with mommy-type-attention in the way that it might go down in a "typical" household.  You know, play dates, shopping adventures, library readings, mall play lands, parks......instead of having my day chopped into little segments of getting their brother to and from school on time, and then to and from therapy on time. Sounds a little selfish maybe, but it's kind of a fantasy of mine if I'm being honest.  However,  not only could I spend this quality time with my youngest babies during these precious years of their lives, but I can feel good about it at the same time because I know that Nicholas is getting the interaction and interventions that he needs and deserves throughout the course of the day. And frankly, he enjoys them!  He loves the interaction in his own little smirky, smiley way! It's true! 

It is pretty evident to me that he loves mommy (blushing... yes, I am) but I'm not exactly the most exciting or enlightening person for him to spend his afternoons with.    Having him home with me all afternoon is a blessing  in some ways, but it is so incredibly difficult to give him adequate attention when the other two munchkins are so young, and still so needy. ("Mommy, I need a cracker! Mommy, I need Milk! Mommy, Brody is in the toilette...wahhhh whaaaa wahhhh!!!) 

Nicholas'  needs always seem to fall behind theirs, mainly because I have to guess what his are, or because I can't implement them (like therapy interventions) because of the constant needing/crying/diaper-changing activity required by my other two.  It's just where we are in life. I'm not complaining or looking for sympathy. It's just simply what it is.  Regardless, there is this constant cloud of mommy-guilt floating over my head each day waiting to open up over my newly washed hair for that very reason.   I was so relieved and elated that this would no longer be the case for us!!!  And then the phone rang.....

Days, meetings, phone calls, and angry emails later (by me, of course....I can only maintain my patience for so long) the "jury" has finally returned to the courtroom and has come to the conclusion, that YES, Nicholas is a good fit for their program....AGAIN!!   Hallelujah!

When I received the call this morning informing me of this news, I did not do a jig all throughout my house, or start exclaiming "praises to the Lord" or words of excitement as I thought I might when I lay awake each night this week anticipating  the decision.   I think, perhaps, I was a little shell-shocked and scared to let myself believe that it was true. (Once again, if I'm being honest, I still am until our IEP meeting is on the calendar and completed....but I'll try and keep the faith this time.... ) Instead, I hung up the phone, finished loading the few dirty dishes that were left in the sink, and then turned to look at my clean counter I had just wiped. And all of the sudden it hit me like a Mack truck into a brick wall.....and the tears began streaming down my cheeks.  So many emotions....joy, fear, sadness, excitement, hesitation,  gratefulness, and satisfaction, and others I can't explain...hit me all at the same time.  

Nicholas has been with this group of caring, loving, and supportive adults for (many of them) almost 3 years now.  They have taught him, fought for him, worked with him, cared for him, celebrated him, and I would even go so far as to say loved him, for all of this time.  For me, they have become my anchors in many ways.  There are very few people who know my son as well as  my immediate family members do, but these women are the only other people on this Earth who do.  And while having to leave them has been a reality in the back of my mind since the beginning of this process, it finally had it's moment to shine today.  

These women, aware or not, are so special to him and to me.  I consider us lucky to have had our family, and in particular, my Nicholas, be given the opportunity to know them, learn from them, and  most importantly, trust them.  They all do their jobs, but they do so much more, and for so little recognition. Not only for my Nicholas, but for others.  When I was pregnant and on bed-rest with my youngest, they all banded together and decided to make meals for my family so that we didn't have to worry about cooking. Despite all they have on their plates already with having child after child to attend to on their case-loads, and family after family to try and support who may be even more in need than mine, and so few hours in which to do so,  they STILL thought of us at that moment.   This was so touching and heart-warming to me, and I only hoped that I might be able to return the favor in some way some day. I still hope that I can....

I am lucky to have known them, and hope to continue relationships with them as our school years progress.  I may never be able to put into words what their involvement in our lives has meant for my family, but we are certainly all better for having known them all, especially Nicholas.  I know he will miss them, even though he won't be able to tell me or them....not yet anyway. But when he can, you can bet I'll make sure they hear about it!!!

As for moving forward, I am excited, and hopeful.  I am cautiously optimistic, and while I have mixed emotions about the situation because of the relationships that we have grown along the way, I have no doubt in my mind that this will be a more appropriate classroom setting for him.  He will be provided opportunities that just aren't possible in his current environment, and I can only hope and pray that he will begin to blossom in his own way. 

I am not expecting perfection, as I'm sure this new environment will also come with it's own set of challenges, and possibly even disappointments. However, I will sleep better each and every night knowing that I have done everything in my power to ensure that he gets what he needs and deserves, and that he will benefit from all of the time and effort that not only myself, but his educators have put into this decision as well.  

To those who have been on Nicholas' team along the way (and you know who you are) I am eternally grateful.  You will always hold a a piece of our hearts, and have placed a piece of our puzzle. Much love to you all!!

Pre-School Purgatory

Change is upon us.   Nicholas has been excelling at his ABA program since this past June.  It pains me to say that we will no longer be able to continue this therapy.  We began this summer, just after the diagnosis was made, with the knowledge that legislation was being passed in the state of Michigan in October requiring insurance companies to cover this type of therapy for those with an Autism diagnosis.  Of course, nothing is ever simple, especially when it comes to insurance coverage. We did not expect simple, or even quick, but we did expect follow through.

It has now been four months, and things are still not ironed out.  Our annual deductible has started fresh again, so even if these insurance issues are resolved soon, we will still be footing the bill for more than we can handle after paying out of pocket for the past 8 months.  (OH, so THAT'S what 'they' were talking about when 'they' said Autism families often go broke and/or remortgage houses to pay for therapies and medical expenses....I could never understand how this was possible. Now I do.)

At any rate, we have been forced to make a decision, and a very tough one at that. ABA is no longer part of our routine. We are done for now.  However, as I explained in IEPhew! Part III, Nicholas is being referred to, and considered for an ASD-specific classroom in another school district.  This process is well underway, and the second observation by the new district occurred last week. Following this, a meeting was held (privately) to discuss the feedback of the receiving school district.  (to date, I still have no details about what this feedback was...) The fact that a second observation  even occurred gives me hope that this decision might go in the direction that I'd hoped, but even if it does, there are some downsides to consider.  While the program is a full day program (which is one of the main reasons I pushed for this) the methods used in the room are not the same as ABA. Some may be similar, but they are not the "tried and true."   Now, I don't believe that any child only learns with one method of teaching, but it's scary (and guilt-provoking) for me to walk away from a teaching/therapy style that has worked so well for Nicholas in recent history. I've said many times, that in all of his interventions that he's been through in his short lifetime, I have not even seen a FRACTION of the progress that he's made in his only 8 months of ABA.   If I commit to this classroom, there is no time for him to return to ABA if it turns out that this new place does not measure up to my expectations, or his learning style. It's a big gamble.  I don't like gambling.

On the flip side, ANYTHING is better than the situation we have going on now, and I have actually since  been in contact with a parent who knows this "potential future classroom" very well, and speaks very highly of it, so I feel that it is now much less of a gamble at least than when we started this process.   Unfortunately, in the meantime,  I can feel the clock ticking (slowly) and my anticipation growing every single day that this decision will be made soon, because now I am witnessing Nicholas' gradual regression with each passing moment....because he is home with me.  All. Afternoon.  On his Ipad. From which I CANNOT separate him.  With his hands constantly in his mouth, and his constant need to stim. While I change diapers, clean messes, wipe faces, calm crying, and try to run a household with three children under age 5. 

It's not good people, it's not good at all.

As much as my intentions are there, I am not a therapist, nor do I have the resources to allow me to even TRY and be a therapist (and by "resources" I mean having sixteen arms, a minimum of three bodies, at least two sets of voices, and a boatload of patience)  Further, it is very clear that I am doing my son an incredible injustice by having him here with me (you know, just his good 'ole Mommy who supposedly knows more than anyone about his needs) all afternoon while I am unable to deliver the interventions that he so much requires in order to stay on track.  It kills me every day to witness and be responsible for this fact.   I actually only recently realized, that this is the very first time in his life that he has not been enrolled in some type of what I will call "extracurricular activity" (a.k.a. Therapy) since before beginning school.  We are now officially off the map....flying through the clouds....lost at sea..... and I have no idea how to do this!  Our life has never been this unstructured!

In the past two weeks since his ABA therapy has ended, we have been surviving  a major adjustment period.  My general day (in my recent past life) consisted of running to and from the gym in the morning, (sans no sick children) and to and from therapy twice a day in the afternoon, all the while juggling anywhere from 2-3 toddlers in the process.  Squeeze in a few mealtimes, bus stop responsibilities, random doctors appointments, meetings with schools, diaper changes, and play time, and this makes for a pretty full and complete day, albeit chaotic.

NOW, (Post-ABA) my day looks  more similar to what I can only assume a "typical" SAHM's day looks like....yes, I'm going out on a limb and making an assumption....you know what they say about those....  Anyway,  my mornings are pretty much the same as they have been all school year, with the chaotic 'breakfast-get Nicholas on the bus-get to and from the gym with the other kids-get home in time to meet the bus-then feed the kids lunch' routine.   However, normally, I am spending a good part of my early afternoon planning meals, snacks, filling milk cups and bottles, timing diaper changes,  and packing diaper bags to make the trips to and from therapy go as smoothly as possible so that somewhere in between our two trips up and down that familiar 3 mile stretch of road, the other two children take their mid-afternoon naps. This nap, is infinitely important to ANY parent who stays home with their young children... because even if for only 30 minutes, it means that we may have peace, quiet, and a few minutes of ME time if the stars and moon align properly and allow this to happen.    My attempt at perfecting our travel schedule timing to allow for this  is something of an engineering feat of miraculousness (yes, I made that word up just now) which requires precision and accuracy of epic proportions.  I have worked very diligently to master this art, and have nearly done so on many occasions!

However, there is no longer a  need for this scheduling miracle.  We no longer have anywhere to be, and nothing specific to do in the afternoons!  Perhaps now we could even squeeze in some play dates and trips to the mall!?!?!  Ahhh, what a sigh of relief!   But not so fast....while it is certainly a pleasant change, and much less stressful in many ways to be able to simply stay home with my children in the middle of the winter, every afternoon, I have now found a new level of stress to replace it.  The stress of not being able to address the needs of my autistic toddler. The stress of watching him slip slowly back into his world of  isolation, fed by his IPad games and television shows, of which I am guilty of allowing out of sheer necessity when I am managing three little ones on my own. (Believe me, it is not as simple as just taking these things away...if you have an autistic child, I don't need to explain to you the ramifications of this....if you don't, well, just come by my house one day and I'll show you what happens...)   The stress of my inability to engage him in the ways that have been successful in our recent past.  The stress of not knowing what our next move will be, or even WHEN our next move will be.... the stress of what I keep thinking of as 'Pre-School Purgatory.'

Yes, indeed, change (and hopefully for the better) is coming for us, and our current situation is only temporary.  But a lot is riding on what happens in the next few weeks, and if things do not go our way, yet another set of decisions will have to be made regarding therapies, schools, and future plans for my little man and for our family as a whole. I haven't a clue how long it will take to finally reach a decision and move forward, but I can only hope that we don't have to start from square one when that time comes.

Between now and then, I suppose I should just try and sit back, relax, and enjoy the new found flexibility in our schedule.  But that is hard to do when you know it is at the expense of one of your children.  Then again, perhaps I shouldn't fret after all, since it is possibly a gain for my other two....see how mentally complicated this gets?

Anyway, in the mean time, I will hope and pray for the best, and try to make the most of our new routine.  Maybe now I can actually make some dinners, or play games and do some crafts with my 2 year old, or sit and read a book to my 1 year old, or schedule play dates with my friends' kids, or visit grandparents.  Whatever the case, I know that purgatory isn't forever, and I will try and find a way to savor it.

Until next time....

From Me to You....Liebster Award!

Thank you to PDD World, my new blogging friend, for nominating me for this award!  I started blogging more for my own theraputic reasons than anything, and as it evolved, I felt that perhaps this would be a way to help others along the way. (Since, after all, blogs were and still are a place of comfort and identification for me.) And that has become my mission...to get my message out and hopefully help at least one other person out there.  Thanks to this award, and to my readers (both old and new) I have been able to get my message out there, and at least make a small statement in this world.  So without further adieu, here's what it's all about....

This award is given to new or up and coming bloggers who have less than 200 followers. The award is then passed along to other bloggers in the same category to help spread the word and support each other.

1. Each blogger should post 11 random facts about themselves.

2. Answer the questions the tagger has set for you, then create 11 new questions for the bloggers you pass the award to.

3. Choose 11 new bloggers (or with less than 200 followers) to pass the award to and link them in your post.

4. Go to their page and tell them about the award.

5. No tag backs.


Let's begin!

11 RANDOM FACTS ABOUT Uncharted Territory:

1. I am a technology-a-holic....I love gadgets, computers, and software that makes my life easier.  But I AM able to turn it off from time to time....and am making a conscious effort to do that more often. 

2. I do not keep potato chips or chocolate chip cookies in my house. These are two foods that I CANNOT stop myself from eating if they are available....IN EXCESS!

3. My husband proposed to me at the top of the Arc d'Triumph in Paris....yes, sickeningly romantic, I know!  :-)

4.  I can blow bubbles off of my tongue....you know, the saliva kind? (ewwww, I know!)  I used to do this in the volleyball huddle in college, and used to get in trouble for this by my coach.  

5. To clarify number 4, I played volleyball in college, and for many years after.  I am now too broken from injuries and child bearing that I will now have to take up a new sport that is less physically trying....perhaps underwater basket weaving?

6. I once ran a half marathon, and on a seperate occasion  rode my bike 100 miles in 2 days.  This was a VERY long time ago....clearly!

7. I prefer listening to music over watching television.

8. My first ever job was corn detasseling (Google it if you really want to know)...I HAD to throw that one in...it always makes people laugh when I tell them this. 

9. I am a HUGE Neil Diamond fan. I know just about every song he's ever written/sung, and have seen him in concert twice. 

10.  I have a new-found love of all things that sparkle. This from a girl who was no-frills for most of my life.  Maybe it's having a little girl that is bringing it out in me.

11. I love to cook, and look forward to spending lots of time in the kitchen with my little ones, but not until they are old enough to help me clean up!

Here are the questions from PDDWorld with my answers:

1) What are three things you CAN NOT live without?   Tweezers, Mc Donald's Diet Coke, and my kids. :-)

2) When was the last time you cried? Hmm, today....I cry all of the time, both for good and bad reasons. I wear it on my sleeve, and that's just the way it is. 

3)  Do you secretly have a favorite kid? Maybe, but if I told you, I'd have to kill you!  :-)

4)  Bath or shower?  Shower for sure. The idea of a bath is nice, but actually taking a bath grosses me out for some reason. 

5) If you saw somebody shoplifting, would you say something or pretend you didn't see anything?  Good one!  I'm not sure...I would probably say something, but if the person looked super down and out, I might just approach them and offer to buy it for them.  

6) Do you have a favorite picture of yourself? Where and when was it taken? Not that I can think of, but if I did, it would not have been taken in the last 5 years!  Darn that baby weight!

7) Do you have any pets? One cat...she's been with me for 10 years.  I smuggled her across the border from Canada to detroit in a duffle bag after finding her on a volleyball court in Windsor.  

8) What song is stuck in your head? Yo Gabba Gabba's "The first day of school, the first day of school, the first day of school, the first day of school!!"  Ugh!  For three days now!

9) Have you ever been arrested? Nada

10) Do you think you're a good judge of a person's character? Usually, but sometimes I'm fooled.

11) When was the last time you laughed til your face hurt? Sadly, I can't remember.  Need to make that happen soon!

QUESTIONS FROM ME TO MY NOMINEES:

1. Were you a regular blog reader before you began blogging yourself?

2. Where is the farthest place you have ever traveled?

3. If you could change one personality trait about yourself, what would it be?

4. Old fashioned book, or Ebooks? 

5. What is your favorite thing to do when you have a moment to yourself at home?

6. What was your childhood (or current) Nickname?

7. Do you have any strange or unusual phobias?

8. What type of vacation do you prefer, relaxing on a beach somewhere, or something more adventurous like hiking up a mountain?

9. What is your biggest pet peave?


10.  If you won a million dollars playing the lottery, what would you do with the money?

11. If you could meet any person in the world (current or historical figure) who would it be?

And now here are MY PICKS for the Liebster Award- Please check them out! .....Also, I am so new that I don't even know of 11 blogs that are so new that they don't have 250 followers, so I researched a few that I PLAN to check out....otherwise, this is going to take me WEEKS to pass this on!

1. http://www.caffeinatedautismmom.com/
2. http://www.imjustthatway.com/
3. http://blogginglily.blogspot.com/
4. http://minikitkatgirl.blogspot.com/
5. http://www.drawingroads.com/index.html
6. http://autism--tearsofaclown.blogspot.com/
7. http://myfamilysexperiencewithautism.blogspot.com/
8. http://pambyrne.blogspot.com/
9. http://www.skinnyscoop.com/listitem/49203/26689/cgregoryrun
10. http://www.confessionsofanaspergersmom.blogspot.com/
11. http://claireandpuppy.blogspot.com/

The Language Barrier

I want to talk about what it's like to have a non-verbal toddler.  I've touched on this before, many times, but I want to talk specifically and solely about this.  And lately, I've gotten a lot more "likes" on my blog's FB page by those who are in the autism community (for which I am grateful, because this is when I feel the feedback will really start coming....for better or for worse!)  and so I'd like to share my experience with this to see if anyone else out there has some insight, hopeful stories, or just plain perspective.  

Unlike many other young autistic children, my son has not yet uttered a single word. Some parents have experiences where their children hit each of their milestones, including speaking, and then watch them drift away at around 18 months of age. This seems to be pretty "typical" when I hear parent's tell their autistic child's story. I have never been able to relate to this.   Jacqueline Laurita, of Real Housewives of New Jersey, fairly recently went public about her son's autism. When I first heard this news, I was watching the reunion show (of which I have admitted many times, I have an unhealthy addiction) and she was having a very emotional discussion about this fact.  Of course, I cry at just about everything these days, but when the audio recording of her young son's voice ended a beautiful  montage of him in which he uttered the words, "I love you" to her, I began to sob.  I felt so incredibly sad for her to have had that moment with him, and then to have watched  it slip away into the 'abyss of language' that is Autism. How could she have known that this may have been the last time she would hear these words from him for a very long time?  (I choose not to say ever again, because I always believe that these kids can find their voice again!)  I could not get over how heartbreaking that must have been for her. I still cry when I think about that. Not just for her, but for every single parent who has that faint memory of their child's sweet voice remaining in their head, and now just looks into their distant eyes each day and no words are exchanged.   I've heard this story over and over from parents whose kids have "lost language" at some point, but to actually hear that little voice so clearly, and to know that it just suddenly disappeared, really was a heart wrenching thought for me.

Oddly enough, some may think that scenario is less heart wrenching than the fact that I have NEVER heard my son utter even a single word.  At about a year old, we got a few "ba ba ba's" out of him, and  even have a "dada" on film at one point, but it never moved past that.  And for this reason, I guess I never really could pinpoint when even the syllables stopped.  Nicholas communicates basically through a series of high pitched whines.  It has been this way for so long, that I just know how to read them, and they don't even sound odd to me anymore. (I'm only aware of them when we are in public somewhere, and I begin getting the stares....) When he's excited, they are accompanied by smiles, and when he is unhappy, they are more distinctive and frustrated sounding.  He does not cry, and has never shed tears.  He only whines.  Well, and laughs, of course!  :-)

When he was younger (pre-diagnosis,) I kept thinking that the language piece would come eventually.  But when therapists started focusing on using alternate communication devices to help him communicate his basic needs (like PECS and the IPad) I started to lose a little hope.  I'm just being honest.  As a parent who is new to the Autism game, but also one who has heard numerous "professionals" say that  "if they don't speak by age 6, it likely won't ever happen," it just lets a little air out of my tires each day that we inch towards his alleged "cut-off" age with no progress in his verbal communication.  For us, this area has been 100% stagnant since beginning speech when he was a year old.  Now, don't mistake...this is not to say that he doesn't communicate at all.  He lets me know now (thanks to ABA) via sign language that he wants milk or his Ipad, but for now, we are limited to basically these two things.  He does not often initiate communication, even if he's hungry. I could ask him 300 times if he wants to eat, and he will not respond in any way.  One could then easily assume that he is not hungry, but when I proceed to bring his food to his table as I do every single day, he will undoubtedly eat the entire bowl and THEN some of whatever is on my menu for that meal.  I may ask him if he's thirsty, and he will not respond with any signals, but eventually I will give him his bottle (because yes, we are working on using a straw but making very slow progress at this) and he will drink the entire 8 ounces in a matter of minutes.

So what is it like to have a non-verbal toddler???  It is scary.  I don't know if he's had a good or bad day at school, if he enjoys the school bus that I send him on every day begrudgingly but out of necessity, if he actually likes the food I make for him or if he just eats it because he's starving, if' he's waking up in the middle of the night because there is a monster under his bed, or because he has a stomach ache.   I mean,  these just are the basics.  But there there are other things I think about.  Do I annoy him when I constantly repeat myself to him just to "make conversation?" What is his favorite color? What things interest him, outside of spelling? (Ironic that one who has not yet found verbal language  is so very gifted and interested in phonics, isnt' it?!) What does he REALLY want to do right now when we have 30 minutes to play? Would he ask to go to the play land at the mall if he could? Or is he really just content sitting here playing on his Ipad like he does every day?  He doesn't initiate much, and he always waits for me to direct him, so I don't know if he feels like he's not SUPPOSED to do anything until prompted, or if he's just truly fine how he is.  Is he ever sad? Does he feel upset when he has to change therapists, or schools?   Does he feel anger?  Does he feel left out when his brother and sister demand more of my time, while he sits contently watching Yo Gabba Gabba?  Does know what love means?  Does he feel love? Does he feel MY love?

I often talk to him and ask him about his day, and try to guess what he would say back to me.  I always try to engage him in "conversation" because I know that he understands every single word that I say, and I'm sure he likes to have my direct attention (even though he doesn't seek it out.)  I know this because of people like Carly Fleischmann, who is a brilliant young woman living with Autism, who has found her voice through typing.  Because of her ability to communicate her insight as an autistic person, I have become aware, almost to a fault, that Nicholas has feelings and emotions that he can't express, and that at some point down the road (whether verbally or by other means) he may tell me that I irritated the hell out of him!  I think about this more often than you'd think. Because of the many Autistic adults who have been able to express that they have thoughts and emotions just like the rest of us, I have educated myself on this and make sure that I acknowledge this to Nicholas.   However, sometimes I feel that because Nicholas is only four, I have no frame of reference as to what he understands, thinks and feels....not only because he's autistic, but because he's FOUR, and I have no idea what other four year olds think about, talk about, and understand.  It's like a double whammy of ignorance for me.

 And the fact of the matter is that it is very difficult to talk to someone who doesn't talk back.  Now, I'm not suggesting that this is at all the same thing (and I also hope this does not offend anyone in any way) but is the best example that I can think of when trying to explain this to someone who has not ever dealt with a non-verbal child.

Think about visiting a loved-one in the hospital who has just fallen into a coma.  You come in, sit down, tell them how you feel about them, and talk as much as you can to them during your visit until you run out of things to say. You tell them positive things, funny things, or just whatever is on your mind in that moment.  You do this because you know that they can hear you, you know they want you there, and you know it is important.  But imagine that this person remains this way for months and months....years even.   And you continue to visit this person each and every day. It becomes harder and harder to find things to talk about, because they are not able to show their interest in your subject matter, and you don't have anything new and exciting to share with them. You can ask them questions, but they can't respond.  So, you continue to tell them how you feel about them, that you love them, and try your best to keep up the one sided conversation each time you visit,  but it becomes more and more difficult as time passes.

Sometimes this is how I feel with Nicholas.  It is different from the scenario above, because of course he can respond to me in SOME ways.    I am thankful every day that I can have hugs and kisses from him (though I don't know if he understands why I ask him for a kiss...)  and he can smile if he thinks something I say is funny.  But from a conversational standpoint, it is just hard to know what to say, how much to say, and when I'm not saying enough.  I don't know if that makes any sense, but I often struggle with this.  I feel that I neglect him "verbally" sometimes because his younger siblings are always asking (or crying) for something, and with Nicholas, it's the opposite....I need to always remember to ask HIM if he needs something.  He is quiet, and sometimes I think his needs are not met as quickly as they should be as a result.

Aside from all of this, I just wonder if he's truly a happy little boy inside.  I wonder if he has interests other than what he outwardly shows through his Ipad and blocks.  I wonder if he wishes that I talked to him more, or if he wishes I'd leave him alone sometimes.  I wonder......I wonder a LOT of things.
We do share our "moments" together, and we have unspoken communication.  Sometimes, instead of talking, I just choose to "be" with him....sitting next to him while he does what he loves (plays word games on his beloved tablet.)  But sometimes, I wonder if that's okay, and if that is enough. These are the times I keep wondering where that rule book is....anyone? Anyone????

So to you autism parents reading this who have experienced this with your kids, I'd love to hear from you.  How do you talk to your kids? What do you say? How do you feel about it?  Also, I should qualify my earlier statement about the verbal 'cut-off" age of 6....I know this not to be true, and I'd love to hear your stories that disprove this horrible theory that is doled out by every professional that I've asked.  Every time I hear about a child who began speaking at age 8, 9, 10, or even 17, it gives me hope that one day I will know my little man's inner thoughts, and who he really is.

After all, that is all I really want.....

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!