Dear Somebody....Anybody,
Please, please help me. I am so tired, so sleep deprived, and so mentally drained. As I sit here, my third night in a row of less than 2 consecutive hours of sleep, I wonder how long this will last. Will it be forever? Why is my son waking? What am I supposed to do for him? Scouring the Internet at 3am searching for answers while my son lays next to me wide awake, fidgeting, and clearly ready to begin his day, I ask WHY??? I have tried just about everything I can think of, and every suggestion I've read online in my desperate hours approaching dawn, as the birds begin to chirp....again. I've talked to therapists, other parents, and doctors. I still have a couple of tricks up my sleeve, but am losing hope that they will work. Despite his lack of sleep, he is happy. I am not. I cannot be a good mother to my children in this state, nor can I be a good wife to my husband. And then again, how much am I expected to give of myself? I have nothing left by the end of the day. I simply struggle through these sleep deprived days, and pray for the next day to be better. Sometimes it is, and sometimes it's not. I desperately want to help him, but I'm waning on energy and just simply can't forge ahead today. This is only one day. But there will be many others. There will be some good ones too, but this is a dark day. So I will do my best, as I always do, but if you are out there..somebody, ANYBODY, please wave your magic wand and tell me how to make this better.
Yours,
A Desperately Exhausted Mommy
Friday, June 22, 2012
Saturday, June 16, 2012
Evolution
I did not have time to write this week, so I thought I'd share a post that I submitted last December to one of my favorite websites, www.spdbloggernetwork.com. It is a site where parents who have children with sensory processing disorders (along with many other diagnosis) share their daily stories. So, here you go....
I had an experience the other day that was neither good nor
bad really, but mostly caught me off guard. As I thought about it afterwards, I
thought it worth sharing with other “sensational” parents because maybe you can
relate.
As many of you surely do, I take my son to therapy 3 times a
week. He has speech, physical, and occupational therapies through a private
facility. We have been going there for about 2 years now, and my son has made
some pretty decent progress in that time. In the beginning, my son was not even
a year old. I remember taking him there for his first evaluations, thinking
that maybe he wouldn’t have to come here for very long. Therapy would be a
“quick fix,” so to speak. I remember also being terrified after sitting in the
waiting room for the first time. As I sat holding my then infant son, who
appeared to be “normal” by most people’s standards (including my own) at that
age, I was surrounded by kids in wheelchairs, some who had braces on their
legs, and others who clearly had what (at that time) I would have considered to
be “behavioral” issues. I remember thinking to myself that at least my son
didn’t have “these” kind of issues. He was just a little delayed physically,
and would surely catch up! I mean really, it’s only human nature to compare
your child to others, and I’m certainly not above that. I also recall feeling
sorry for the parents of these children, thinking how difficult it must be for
them, and how sad they must feel that their child has issues that, from my oh,
so expert observation, could potentially be lifelong. Thank goodness this isn’t
my situation, I thought!
Well, two years have passed since then, and my son is now
three years old. And in those two years, a LOT has changed…including my
perspective. Therapy has continued, and my son’s issues have not only not
disappeared, but have only become more complex. Granted, he has made some
awesome progress, and we are very proud of him. But I am no longer under the
grand illusion that his need for therapy will end anytime soon. My perspective
of the therapy facility has also changed. When I am in the waiting room each
week, it is almost as if it is my home away from home. I have come to feel
comfortable there, maybe more-so than in the typical places parents go…like a
kid’s play land at the mall, for example. Why? Because these families that I
have met through my time spent here who dedicate their lives to their children
with special needs (along with their other children of course!) have become
almost like another kind of family to me. In those hours spent in the waiting
room, or in the therapy rooms, I have gotten to know the staff and the other
parents. We have shared, cried, laughed, commiserated, and most importantly,
bonded. Here, I feel safe. I don’t feel that I’m being judged, and I feel that
my son is being cheered on rather than observed and secretly wondered about. It
is my own little bubble, and I never realized it until recently.
So this week, I was floating around the therapy facility in
my little bubble as usual. My son was being treated in the same PT room as
another little guy who was probably about 5 years old. As I sat and watched my
son’s treatment, I noticed the other little guy, but wasn’t really paying too
much attention. After about 15 or 20 minutes, I noticed the boy’s mother really
observing my son and eying me. Eventually, she came right out and asked me how
old my son was, and why he was here. I responded simply, “He’s three, and he
has Cerebral Palsy.” To this, she replied, “Oh! I couldn’t even tell.” Hmmm,
this is when the red flag went up for me. Because I know that not all kids with
needs show immediate outward signs of their diagnosis, I would not even DREAM
of saying this to a parent who had just revealed this kind of information to
me. A few moments later, she qualified her reason for being there by telling me
that her son had “just twisted his ankle and injured a ligament so he just
needed a little strengthening” to overcome his injury. It was as if she needed
to let me know that there was nothing “really wrong” with her son that would
warrant him to be in a place such as this for any length of time. Of course,
this woman meant NO harm by saying any of this, in fact, quite the opposite I’m
sure. But for a moment, I realized that I felt a bit violated….like someone had
intruded into my safe place….”burst my bubble,” so to speak. I was very caught
off guard, and my internal reaction surprised me really. I now viewed her as
almost an impostor in my safe little world.
Interestingly enough, I didn’t take offense to her comment
about my son at all, because I don’t expect that every person should be
all-knowing on such topics as developmental delays in children, and in
particular, the political correctness of how to address such topics. I mean, is
there really a “right” way? In retrospect, I am actually impressed that she was
brave enough to just come out and ask me the question…many people with
“typical” children would be too afraid of offending me. At any rate, what she
said, and how she said it is not really the point of my story. The point is
this: I realized in the moment that she
asked about my son’s “issues” that I had actually evolved into being the
“other” parent in the waiting room. I became that parent for whom I’d once
observed in my frightened state, and felt sorry. I was the one in that
situation for which she, and likely others for that matter, may look upon and
breathe a sigh of relief because it is not THEIR situation. I am now the parent
that has the scenario that scares so many parents, and I know this only because
it would have scared me not so long ago. However, the other thing that I
realized in that moment was that this scenario no longer scares me the way it
once did.
This is now MY “normal.” My son’s “life- long issues” are
just taken a day at a time, and I find just as much joy in parenting him as I
do my “typical” daughter. Sure, I have my moments of sadness or despair, but it
has not placed a giant cloud of sadness over my head the way I once imagined it
must for those parents I had observed in the waiting room that day two years
ago. Before, I wouldn’t have thought that possible. So, in a way, it was like a
small victory for me. In that moment, I learned, without even realizing it,
that I have evolved. I have overcome! I am the proud mother of a special needs
child, and I do not feel sorry or fearful about this fact anymore. This is not
to say that my life is all roses, and it DOES come with its unique set of
challenges which can, at times, tear me apart. However, even though my parenting
experience may be different from others, I love every minute of it, and I
celebrate every single milestone that each of my children achieve with pride! I
am grateful for that one moment in time, because now I am aware that I have
grown as a parent, and for that, I feel proud!
Sunday, June 10, 2012
The I.E.P(hew!) Meeting
I have come to grips with having a child with special needs. I have mourned the loss of the idea of what my son's childhood would look like, and accepted it for what it is....uncertain, and unpredictable. I suppose this is true for all kids, but in our case, the variances and uncertainties are exponentially greater, and much more visible and immediate. One thing I cannot come to grips with, however, is how complicated and convoluted the educational system becomes when you add the "special needs" label to your child, and the amount of time that I foresee devoting to this part of his life from now going forward.
I recall attending a Wright's Law conference the spring before my son was embarking upon starting pre-school. For those who do not know what this is, it has to do with special education laws. We had only had positive interactions with the school personnel at that point (and for that matter, still!) and I loved all of his therapists and teacher (and still do!) It all seemed so simple and I was feeling pretty good about him beginning school with this great team behind him. Having no idea what this conference was really all about, it was suggested to me by another parent that I attend.
At the time, I thought it would just be an informative session about schooling options for special needs kids, and also a day away from the responsibilities of changing diapers, feeding meals, and cleaning up messes. I could not have been more wrong. After eight hours of being seated in a room with a few hundred parents, teachers, school administrators (who by the way, the administrators were the brave ones for attending, I later learned....) I walked out feeling completely overwhelmed and numb. My eyes had been opened to a prospect that I didn't know existed, nor did I want think about.....that my son's education was not a given, and that I was going to have to fight my ass off for him. Until that moment, I knew only that there were special education classrooms, and there were general education classrooms. I also thought that in a special ed classroom, my child (along with all of the others who were in there) would just automatically be given what they needed in terms of instruction and support. What that was, however, I had no idea. This is not my area of expertise, of course. And at that point, I was thinking that perhaps Nicholas would be in the general education classroom by the time he reached kindergarten anyway! At this point, we did not have an accurate diagnosis for him, and so I held hope that maybe a switch would just flip, and this would all just go away.
The speaker (a lawyer from a different state) spoke very technically about special education law in the state of MI, and my need to know it, understand it, and use it to my benefit. The parents in the room with me, very clearly jaded from years of their battles with their respective schools, asked pointed and heated questions. The discussions during this conference were filled with acronyms... I.E.P, FAPE, MET, IDEA.....I could go on and on. I knew what NONE of them stood for at that time, and just trying to keep up with this new language during the conference was exhausting for me.
I distinctly remember calling my husband during a break, nearly in tears. I could not believe what I was hearing! It's not that the school is our enemy, the lawyer kept reiterating, but unfortunately, like everything else, money plays a huge factor in how decisions are made for these children. I was learning that often times, it was at the expense of the child who needed some extra support beyond that of a typical student. Not only that, but there is a very specific and complex way about which to request additional help and services for your child, and you MUST know this process and your rights inside-out as a special needs parent. I kept thinking to myself that maybe none of this would ever apply to us because we have such a great district, and great teachers, and, and, and......
Well, fast forward to last week. IEP time. We still have a great teacher, and a great district, but now we also have more information. My son's recent diagnosis of Autism was a game changer for me. This meant to me that his school environment/placement needed to change drastically in order to meet his very specific needs, and more importantly, for him to gain anything from being there. Kids with autism function differently, and in turn, learn differently. They require much one on one time with their educators and therapists, along with constant repetition and redirection. Skills that come naturally to most kids, like playing and interacting, must be taught to one with autism. This, unfortunately, is just not possible in the classroom that he currently is in. There are simply too many other kids with unique needs, and too few adults available to really reach Nicholas in that 2 1/2 hours per day. I mean, let's face it....I can't even meet his needs all of the time at home with only two other children in the house. And while he has made good progress over the year, I can only imagine that it is a draught compared to what progress he could have been be making with much more direct interaction with his educators.
In many districts, there are classrooms specifically designed for ASD (Autism Spectrum Disorder) kiddos, which have a limited number of students (6 or less,) ASD-trained instructors, and many special sensory additions to the classrooms to help these kids neutralize their behaviors throughout the day as needed. And usually, these are all-day programs which, as a result, provide much more intensive instruction for the kids. Unfortunately for us, this type of classroom is not currently available at the pre-school level in our district. Upon learning this, I was very disappointed, and this is also when I realized that I was going to have to do some major homework, and perhaps that conference would come into play after all.
After spending a better part of two weeks researching the Michigan Special Education laws (known as IDEA), talking to advocates, advocacy groups run by the state, securing a facilitator for our meeting, reviewing at least three books on how to write IEP goals, actually writing these goals in preparation for the meeting, and pulling together medical reports from all of his therapists, gathering his new medical diagnosis reports, and documenting every bit of information I could to find to support my case for his need for a more structured classroom environment, the meeting had finally arrived.
I will spare the details, and suffice to say, that after 3 1/2 hours of discussing every aspect of my son's school existence, I walked away feeling exhausted, both physically and mentally. We are not even yet at the point in this very complex process for which I can even request a different classroom environment for him. That is coming up after yet another part of the process is completed....long story, and it will be this fall before we cross that bridge. But the bottom line is that as a parent, I am just starting to feel the very significant amount of time that this will take to advocate for my son. And in doing this, this significant amount of time is taken away from my other children who deserve JUST as much of me as Nicholas does. This is a very frustrating feeling for me, because I just simply wish it were easier. Everything about Nicholas requires more time, more money, more attention, and he deserves every little bit of that. But trying to find the balance with two other children in the picture seems almost impossible sometimes. I can only imagine it will get more difficult as time passes. I always hear about the parents who are running from this baseball game, to that dance recital, to this science fair.....and for me, I will have those things thrown in with I.E.P meetings, and therapy appointments. Maybe for us, this will actually even things out a little. When my younger kids reach ages where they are involved in other activities, maybe that will actually make it seem less like it is all about Nicholas. Who knows? I have this same basic struggle with balance almost daily. This is exactly why I feel that this journey is "uncharted territory," because I don't know anyone who has been in my exact situation, or even a similar one for that matter, who can tell me how it all worked out for them in the end.
As with every learning experience, I'm sure I will find a way to manage all of this. But it is difficult to keep the "mommy-guilt" in check at times. But for now, I can at least be proud to say that I basically have earned an honorary degree in special education law! As I've said before, Nicholas has a unique way of getting me to learn ALL kinds of new things! Only time will tell what is next, and which of my kids will be teaching me the lesson.
I recall attending a Wright's Law conference the spring before my son was embarking upon starting pre-school. For those who do not know what this is, it has to do with special education laws. We had only had positive interactions with the school personnel at that point (and for that matter, still!) and I loved all of his therapists and teacher (and still do!) It all seemed so simple and I was feeling pretty good about him beginning school with this great team behind him. Having no idea what this conference was really all about, it was suggested to me by another parent that I attend.
At the time, I thought it would just be an informative session about schooling options for special needs kids, and also a day away from the responsibilities of changing diapers, feeding meals, and cleaning up messes. I could not have been more wrong. After eight hours of being seated in a room with a few hundred parents, teachers, school administrators (who by the way, the administrators were the brave ones for attending, I later learned....) I walked out feeling completely overwhelmed and numb. My eyes had been opened to a prospect that I didn't know existed, nor did I want think about.....that my son's education was not a given, and that I was going to have to fight my ass off for him. Until that moment, I knew only that there were special education classrooms, and there were general education classrooms. I also thought that in a special ed classroom, my child (along with all of the others who were in there) would just automatically be given what they needed in terms of instruction and support. What that was, however, I had no idea. This is not my area of expertise, of course. And at that point, I was thinking that perhaps Nicholas would be in the general education classroom by the time he reached kindergarten anyway! At this point, we did not have an accurate diagnosis for him, and so I held hope that maybe a switch would just flip, and this would all just go away.
The speaker (a lawyer from a different state) spoke very technically about special education law in the state of MI, and my need to know it, understand it, and use it to my benefit. The parents in the room with me, very clearly jaded from years of their battles with their respective schools, asked pointed and heated questions. The discussions during this conference were filled with acronyms... I.E.P, FAPE, MET, IDEA.....I could go on and on. I knew what NONE of them stood for at that time, and just trying to keep up with this new language during the conference was exhausting for me.
I distinctly remember calling my husband during a break, nearly in tears. I could not believe what I was hearing! It's not that the school is our enemy, the lawyer kept reiterating, but unfortunately, like everything else, money plays a huge factor in how decisions are made for these children. I was learning that often times, it was at the expense of the child who needed some extra support beyond that of a typical student. Not only that, but there is a very specific and complex way about which to request additional help and services for your child, and you MUST know this process and your rights inside-out as a special needs parent. I kept thinking to myself that maybe none of this would ever apply to us because we have such a great district, and great teachers, and, and, and......
Well, fast forward to last week. IEP time. We still have a great teacher, and a great district, but now we also have more information. My son's recent diagnosis of Autism was a game changer for me. This meant to me that his school environment/placement needed to change drastically in order to meet his very specific needs, and more importantly, for him to gain anything from being there. Kids with autism function differently, and in turn, learn differently. They require much one on one time with their educators and therapists, along with constant repetition and redirection. Skills that come naturally to most kids, like playing and interacting, must be taught to one with autism. This, unfortunately, is just not possible in the classroom that he currently is in. There are simply too many other kids with unique needs, and too few adults available to really reach Nicholas in that 2 1/2 hours per day. I mean, let's face it....I can't even meet his needs all of the time at home with only two other children in the house. And while he has made good progress over the year, I can only imagine that it is a draught compared to what progress he could have been be making with much more direct interaction with his educators.
In many districts, there are classrooms specifically designed for ASD (Autism Spectrum Disorder) kiddos, which have a limited number of students (6 or less,) ASD-trained instructors, and many special sensory additions to the classrooms to help these kids neutralize their behaviors throughout the day as needed. And usually, these are all-day programs which, as a result, provide much more intensive instruction for the kids. Unfortunately for us, this type of classroom is not currently available at the pre-school level in our district. Upon learning this, I was very disappointed, and this is also when I realized that I was going to have to do some major homework, and perhaps that conference would come into play after all.
After spending a better part of two weeks researching the Michigan Special Education laws (known as IDEA), talking to advocates, advocacy groups run by the state, securing a facilitator for our meeting, reviewing at least three books on how to write IEP goals, actually writing these goals in preparation for the meeting, and pulling together medical reports from all of his therapists, gathering his new medical diagnosis reports, and documenting every bit of information I could to find to support my case for his need for a more structured classroom environment, the meeting had finally arrived.
I will spare the details, and suffice to say, that after 3 1/2 hours of discussing every aspect of my son's school existence, I walked away feeling exhausted, both physically and mentally. We are not even yet at the point in this very complex process for which I can even request a different classroom environment for him. That is coming up after yet another part of the process is completed....long story, and it will be this fall before we cross that bridge. But the bottom line is that as a parent, I am just starting to feel the very significant amount of time that this will take to advocate for my son. And in doing this, this significant amount of time is taken away from my other children who deserve JUST as much of me as Nicholas does. This is a very frustrating feeling for me, because I just simply wish it were easier. Everything about Nicholas requires more time, more money, more attention, and he deserves every little bit of that. But trying to find the balance with two other children in the picture seems almost impossible sometimes. I can only imagine it will get more difficult as time passes. I always hear about the parents who are running from this baseball game, to that dance recital, to this science fair.....and for me, I will have those things thrown in with I.E.P meetings, and therapy appointments. Maybe for us, this will actually even things out a little. When my younger kids reach ages where they are involved in other activities, maybe that will actually make it seem less like it is all about Nicholas. Who knows? I have this same basic struggle with balance almost daily. This is exactly why I feel that this journey is "uncharted territory," because I don't know anyone who has been in my exact situation, or even a similar one for that matter, who can tell me how it all worked out for them in the end.
As with every learning experience, I'm sure I will find a way to manage all of this. But it is difficult to keep the "mommy-guilt" in check at times. But for now, I can at least be proud to say that I basically have earned an honorary degree in special education law! As I've said before, Nicholas has a unique way of getting me to learn ALL kinds of new things! Only time will tell what is next, and which of my kids will be teaching me the lesson.
Saturday, June 2, 2012
Just a Memory.....
Just came across these and wanted to share again. The first photo was taken in May of last year. Nicholas was using his magic wheels to give him a new perspective on mobility. The second photo was taken just a few months later in August. Just goes to show what a few months can do with the proper tools! And today, we can't keep this kid from wandering off to the neighbor's yard! Back then, I wasn't sure I'd see the day. Looking at this helps me keep the faith that so many more good things are to come!! Love you buddy!!
Friday, June 1, 2012
On Sleeping...Or Lack Thereof
It's 2:00am. I have just finished feeding Brody, my 4 month old, his mid-night bottle (of which the pediatrician says I should have already weaned him from....yeah right. YOU listen to him scream at 1:30am!!) As I roll over, and snuggle my body pillow, ready to reach the depths of sleep I was just jarred from by my crying infant, I hear the dreaded noises coming from Nicholas' room. The "eeeeees" and "aaaahhhhhsss" and growls of a sleepless and talkative toddler. Here we go again, I think. This has been the trend over the past couple of months. Despite attempting to keep an afternoon nap (because "they" say this actually promotes sleep at night,) give up an afternoon nap (because what "they" say wasn't working,) increase his evening dose of melatonin to almost double his original dose, let him run around outside or anywhere just to wear him out, nothing seems to keep him asleep at night. Now, I know all parents say that they don't sleep for at least 18 years, and in particular when you have multiple children. I get that our situation is not unique in that way. However, what is unique is why he is waking. It's not to come and climb into bed with us, or request some water or milk, or to ask for a snack. It's not because there is a boogie man in his room, or a dragon under his bed. Or is it???? This is what pains me. When I hear him in his room at night, it frustrates me because it is not his fault. His brain simply does not function like a typical child, and often times, children with special needs of many kinds do not have the same innate ability to distinguish between night and day like most of us do. So this is my best guess as to why he is waking.... his confused unique brain. Whether or not I am right is just another question I will probably never know the answer to.
He is not always unhappy when he wakes. Sometimes he just continues "talking" and even laughing at only Lord knows what for an hour or two....or three. Often, if my husband or I try to coax him back to sleep, it is to no avail. After so many weeks of this occurring, we have decided that the only thing to do is let it run its course. He sometimes even becomes more agitated when we try to intervene by lying next to him, re-covering him with his weighted blanket, or just simply placing a hand on him to try and calm him. However, last night, I just couldn't listen to it anymore. It had been going on for 45 minutes or so, and of course I cannot ever sleep soundly through this ordeal, and quite to the contrary, I end up laying there with an adrenaline rush trying to figure out why it is happening, and what to do for him.
After a string of exasperated obscenities poured out of my mouth (because yes....I am human and tired,) I decided to drag my exhausted body out of bed and take a crack at it one more time. Maybe it would be different than our countless other attempts. As I crept into his room, I found him laying face down in an awkward position at the end of his bed rocking and "stimming," which is common for autistic children (according to what "they" say) His moans continued, and as I picked him up to place him on his pillow, I saw the crusty remnants of a bloody nose....also a nightly/weekly ritual in our house. (Lucky, Nicholas got this fabulous family genetic trait from me.) I re-positioned him on the bed, grabbed a wet wash cloth to clean his face, and began my attempt at lulling him back into a state of sleep....whatever state that may be. I began by gently stroking his face around his eyes, nose and cheeks. Instead of this calming him, as I'd hoped, instead he began hysterically laughing. Only THIS could evoke a laugh from ME at this ridiculous time of night....his laugh always warms my heart. After the novelty of the 2am laugh wore off, I then decided to lay my head down on his chest, hoping that the added pressure to his trunk would calm him and draw him back to sleep. Unfortunately, this resulted in his flailing around, hitting me, and becoming very agitated. Eventually, I found myself postured in a position where the lower half of my body was hanging off the side of the tiny toddler bed, and my trunk was pressed against Nicholas' chest. I began to run my fingers through his hair, while simultaneously using the "Shhh Shhh Shhh" method that I use many times a day with my baby, Brody. I figured if it works for him, it's worth a shot for Nicholas! So, there I sat....as still as humanly possible as to not disturb the quiet and peaceful (but still awake) state in which I now found him.
I continued to use my "magic method," while rubbing his head and slowly but surely, my body began to stiffen and tingle. I tried as long as I could to not move, as I saw his eyes begin to finally roll back into his head, but quickly pop back open every few seconds. C'mon Renee.....you can hang in here for a few more minutes until he is out! Ten minutes passed without so much as a leg shift from me. Eyes closing, popping open..... C'MON!!! How does this kid stay AWAKE like this??? It's like he's trying to win a contest or something! Finally, and unfortunately before it was "safe" to move, the cramp that had been forming in my arm from leaning on it for now a solid 15 minutes became more than I could stand. And so I shifted ever so slightly...... Well, of course, at this his eyes popped open like Jack out of his Box. They were now WIDE open, and it was as if he'd never even been close to sleeping in the first place. This is when his famous vocal songs began again. Hmph.....foiled again. So there it went....my window of opportunity to get him back to sleep had disintegrated after a 45 minute attempt. I retreated from his room (now close to 3am) feeling completely defeated and exhausted.
This was a night when I just wished that when I had a child awaken before dawn, that he could at least be soothed by me telling him that the boogie man wasn't under his bed, or by giving him a sip of water, or even letting him crawl into bed with me. But this is not my reality, and I will continue to try and read his mind for as long as it takes. He is worth it. Until then, I will always wonder what makes him talk and laugh into the night.
He is not always unhappy when he wakes. Sometimes he just continues "talking" and even laughing at only Lord knows what for an hour or two....or three. Often, if my husband or I try to coax him back to sleep, it is to no avail. After so many weeks of this occurring, we have decided that the only thing to do is let it run its course. He sometimes even becomes more agitated when we try to intervene by lying next to him, re-covering him with his weighted blanket, or just simply placing a hand on him to try and calm him. However, last night, I just couldn't listen to it anymore. It had been going on for 45 minutes or so, and of course I cannot ever sleep soundly through this ordeal, and quite to the contrary, I end up laying there with an adrenaline rush trying to figure out why it is happening, and what to do for him.
After a string of exasperated obscenities poured out of my mouth (because yes....I am human and tired,) I decided to drag my exhausted body out of bed and take a crack at it one more time. Maybe it would be different than our countless other attempts. As I crept into his room, I found him laying face down in an awkward position at the end of his bed rocking and "stimming," which is common for autistic children (according to what "they" say) His moans continued, and as I picked him up to place him on his pillow, I saw the crusty remnants of a bloody nose....also a nightly/weekly ritual in our house. (Lucky, Nicholas got this fabulous family genetic trait from me.) I re-positioned him on the bed, grabbed a wet wash cloth to clean his face, and began my attempt at lulling him back into a state of sleep....whatever state that may be. I began by gently stroking his face around his eyes, nose and cheeks. Instead of this calming him, as I'd hoped, instead he began hysterically laughing. Only THIS could evoke a laugh from ME at this ridiculous time of night....his laugh always warms my heart. After the novelty of the 2am laugh wore off, I then decided to lay my head down on his chest, hoping that the added pressure to his trunk would calm him and draw him back to sleep. Unfortunately, this resulted in his flailing around, hitting me, and becoming very agitated. Eventually, I found myself postured in a position where the lower half of my body was hanging off the side of the tiny toddler bed, and my trunk was pressed against Nicholas' chest. I began to run my fingers through his hair, while simultaneously using the "Shhh Shhh Shhh" method that I use many times a day with my baby, Brody. I figured if it works for him, it's worth a shot for Nicholas! So, there I sat....as still as humanly possible as to not disturb the quiet and peaceful (but still awake) state in which I now found him.
I continued to use my "magic method," while rubbing his head and slowly but surely, my body began to stiffen and tingle. I tried as long as I could to not move, as I saw his eyes begin to finally roll back into his head, but quickly pop back open every few seconds. C'mon Renee.....you can hang in here for a few more minutes until he is out! Ten minutes passed without so much as a leg shift from me. Eyes closing, popping open..... C'MON!!! How does this kid stay AWAKE like this??? It's like he's trying to win a contest or something! Finally, and unfortunately before it was "safe" to move, the cramp that had been forming in my arm from leaning on it for now a solid 15 minutes became more than I could stand. And so I shifted ever so slightly...... Well, of course, at this his eyes popped open like Jack out of his Box. They were now WIDE open, and it was as if he'd never even been close to sleeping in the first place. This is when his famous vocal songs began again. Hmph.....foiled again. So there it went....my window of opportunity to get him back to sleep had disintegrated after a 45 minute attempt. I retreated from his room (now close to 3am) feeling completely defeated and exhausted.
This was a night when I just wished that when I had a child awaken before dawn, that he could at least be soothed by me telling him that the boogie man wasn't under his bed, or by giving him a sip of water, or even letting him crawl into bed with me. But this is not my reality, and I will continue to try and read his mind for as long as it takes. He is worth it. Until then, I will always wonder what makes him talk and laugh into the night.
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