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.
Friday, May 18, 2012
Funny Signs: A Tale of our Dinner Out with the Kids
Last night, when out to dinner with my Sis and Bro-in-law, I was reminded of a story I told them a while ago that I thought was pretty funny. Figured it would be a good one to share, so here it is.
Several weeks ago, just after Brody was born, I was feeling particularly adventurous one Friday night (and consequently, feeling not much like cooking) so we decided to take our maiden voyage out to dinner as a "party of five." We chose a little diner-type place that we had been to once before with Nicholas and Avery (Brody still on board at that point) because it was spacious, and not really ever crowded. As with many families, we like to choose places that are easy to lug the kids into, and where we will disturb as few people as possible if anyone starts to scream and cry or fling food across the room. Additionally, this place happens to have mashed potatoes on the menu, which is one of about 3 foods that we can successfully get Nicholas to eat without having to pack a seperate bag of his favorites. So, it was all set! We piled the kids into the new "Swagger Wagon," and ventured to the restaurant.
On this day, Nicholas had been particularly vocal for most of the day at home. Now, this may seem strange since he doesn't "talk" per say, but he DOES talk in his own way. He uses his voice, and makes a series of "EEEEEEEE's" and "AHHHHHHHS" that vary in degrees of pitch and volume depending on what he is "talking" about. If he is happy, these are accompanied by smiles and maybe a laugh or two. If he is unhappy, his face twists into a look of disgruntlement, and they become like more of a while until I can figure out what he needs. I must admit that after listening to this series of sounds for a better part of the day, my tolerance for it decreases by about 5pm. It becomes something like nails on a chalkboard for me, because often times, he is not necessarily upset by anything, but just chooses to talk for the entire day. It is a reminder to me that I have no idea what is going on in his head that excites him so, and therefore it becomes frustrating to me. My hopes were that by changing the environment, and trying this little dinner excursion, it would settle him down into a more quiet and calm state.
Well, I couldn't have been more wrong. We began our evening by barreling into this quiet restaurant, requesting a large table in the addition at the front of the restaurant (which was presently free of other diners-BONUS!), settling the two older kiddos into their high chairs, and plopping Brody onto the table in his car seat. All was well in the land of dining so far. And as usual, we ordered the kids' food first, so that one of us can focus on feeding Nicholas (which I will suffice to say can be very challenging) and so that Avery won't have a melt-down because she is starving to death. Still, so far so good. However, as we were waiting for our food, Nicholas was talking away, and becoming increasingly agitated in his vocal way. We brought a few things that he typically likes to play with at the table, and these were not seeming to do the trick for him. After about 10 minutes of his non-stop, slightly irritated talking, the food arrived. I'm thinking, "mashed potatoes....one of his favorites. Maybe he is just hungry and once he starts to eat he will settle down." Wrong again! As Avery picked at her food, my husband and I took turns trying to feed Nicholas. He started to get really angry, and would "EEEEE EEEEEE" and "AHHHH AHHH" while simultaneously turning his head away from the food, squirming in his seat, and absolutely refusing to eat. Hmmmm, Ok, weird. What now? Well, after several attempts, we gave up at feeding him. Though they say "when a kid is hungry, he will eat," this does not apply to my son. Often times it is about how you are PRESENTING the food which causes him to become agitated and refuse to eat it. But this time, he simply did not want to eat, and we figured we'd just enjoy OUR dinner and deal with it later. At last, our dinner arrives. At about this time, Nicholas begins what I would consider to be a total melt-down of epic proportions. While some kids on the spectrum tend to have melt-downs that are much louder and maybe more obvious than Nicholas' (for which I am thankful I do not yet deal with), for him, this was one of his worst. He began thrashing around in his seat, swiping the items we had brought for him to play with all over the floor, and making this guttural noise that was as close to yelling as he is capable. (He's just not a screamer kind of kid. ) Meanwhile, amidst the chaos happening at our table, a lovely older couple was seated at the table DIRECTLY next to us. Fantastic! Here they are, probably just out for a nice quiet Friday night dinner, and they are seated next to a table with three kids, one of whom is fussing for a bottle, another who is bored with her food and on to whining about wanting to get down, and the third of which is flailing around like a caged dog who wants to chase a cat! We had just become "THAT TABLE!" At this point, I decided, for both their sanity and mine, that we had reached a point at which it was appropriate to take Nicholas outside to see if he would calm down a bit. Now, let's not mistake.....this is not because I was "embarrassed" by his behavior. If any of my kids were creating a scene such as this, Autism or not, I would feel it my civil duty to act in the same manner and remove my child from the situation for the benefit of the other diners. This is just my personal approach to family dining, and my opinion of proper unwritten restaurant etiquette.
At any rate, this night, it happened to be Nicholas. So he and I stepped outside for a few minutes, and his fit continued as my dinner sat cooling off on the table to an inedible temperature. My husband, on the other hand, eats like a tornado moving across Kansas, so by the time I came back in with my temperamental boy, he was almost finished eating. We agreed that it would be best if he just take Nicholas to the car, while I ate my dinner, paid the bill, and rounded the others up for the journey home. All the while, this couple eyeballed us a couple of times, but did not seem particularly irritated. Who knows, maybe they were just being polite. So, I finished up my dinner, quietly (and still sweating!), with the other two at the table with me. I began to pack up our things, and recover from the stress of this entire situation which had only been exacerbated by the fact that we now had witnesses. As I wondered to myself if these innocent bystanders would be cursing us after we left, I glanced over at them with an apologetic look. And here's the funny part.....they did not notice my glance because they were in some sort of discussion with each other. And this discussion was in the form of SIGN LANGUAGE!!! OMG!!! It hit me like a brick that these two people had not been disturbed in the SLIGHTEST by our crazy table! They hadn't heard a THING! It was probably the most unlikely thing that could have happened at that moment, and the irony of it was hysterical to me!
After the humor of it all passed, it did make me think. We all have our challenges, but in those challenges, sometimes there come benefits. Nicholas may have Autism to struggle with, but with that will come his special abilities (like being able to spell at age 3!) that won't come so easily to other kids. For this couple, their challenge was adapting to living with their hearing loss, but thankfully for them, it also spared them a potentially very irritating dinner on the town! See! Every cloud DOES have a silver lining!
Several weeks ago, just after Brody was born, I was feeling particularly adventurous one Friday night (and consequently, feeling not much like cooking) so we decided to take our maiden voyage out to dinner as a "party of five." We chose a little diner-type place that we had been to once before with Nicholas and Avery (Brody still on board at that point) because it was spacious, and not really ever crowded. As with many families, we like to choose places that are easy to lug the kids into, and where we will disturb as few people as possible if anyone starts to scream and cry or fling food across the room. Additionally, this place happens to have mashed potatoes on the menu, which is one of about 3 foods that we can successfully get Nicholas to eat without having to pack a seperate bag of his favorites. So, it was all set! We piled the kids into the new "Swagger Wagon," and ventured to the restaurant.
On this day, Nicholas had been particularly vocal for most of the day at home. Now, this may seem strange since he doesn't "talk" per say, but he DOES talk in his own way. He uses his voice, and makes a series of "EEEEEEEE's" and "AHHHHHHHS" that vary in degrees of pitch and volume depending on what he is "talking" about. If he is happy, these are accompanied by smiles and maybe a laugh or two. If he is unhappy, his face twists into a look of disgruntlement, and they become like more of a while until I can figure out what he needs. I must admit that after listening to this series of sounds for a better part of the day, my tolerance for it decreases by about 5pm. It becomes something like nails on a chalkboard for me, because often times, he is not necessarily upset by anything, but just chooses to talk for the entire day. It is a reminder to me that I have no idea what is going on in his head that excites him so, and therefore it becomes frustrating to me. My hopes were that by changing the environment, and trying this little dinner excursion, it would settle him down into a more quiet and calm state.
Well, I couldn't have been more wrong. We began our evening by barreling into this quiet restaurant, requesting a large table in the addition at the front of the restaurant (which was presently free of other diners-BONUS!), settling the two older kiddos into their high chairs, and plopping Brody onto the table in his car seat. All was well in the land of dining so far. And as usual, we ordered the kids' food first, so that one of us can focus on feeding Nicholas (which I will suffice to say can be very challenging) and so that Avery won't have a melt-down because she is starving to death. Still, so far so good. However, as we were waiting for our food, Nicholas was talking away, and becoming increasingly agitated in his vocal way. We brought a few things that he typically likes to play with at the table, and these were not seeming to do the trick for him. After about 10 minutes of his non-stop, slightly irritated talking, the food arrived. I'm thinking, "mashed potatoes....one of his favorites. Maybe he is just hungry and once he starts to eat he will settle down." Wrong again! As Avery picked at her food, my husband and I took turns trying to feed Nicholas. He started to get really angry, and would "EEEEE EEEEEE" and "AHHHH AHHH" while simultaneously turning his head away from the food, squirming in his seat, and absolutely refusing to eat. Hmmmm, Ok, weird. What now? Well, after several attempts, we gave up at feeding him. Though they say "when a kid is hungry, he will eat," this does not apply to my son. Often times it is about how you are PRESENTING the food which causes him to become agitated and refuse to eat it. But this time, he simply did not want to eat, and we figured we'd just enjoy OUR dinner and deal with it later. At last, our dinner arrives. At about this time, Nicholas begins what I would consider to be a total melt-down of epic proportions. While some kids on the spectrum tend to have melt-downs that are much louder and maybe more obvious than Nicholas' (for which I am thankful I do not yet deal with), for him, this was one of his worst. He began thrashing around in his seat, swiping the items we had brought for him to play with all over the floor, and making this guttural noise that was as close to yelling as he is capable. (He's just not a screamer kind of kid. ) Meanwhile, amidst the chaos happening at our table, a lovely older couple was seated at the table DIRECTLY next to us. Fantastic! Here they are, probably just out for a nice quiet Friday night dinner, and they are seated next to a table with three kids, one of whom is fussing for a bottle, another who is bored with her food and on to whining about wanting to get down, and the third of which is flailing around like a caged dog who wants to chase a cat! We had just become "THAT TABLE!" At this point, I decided, for both their sanity and mine, that we had reached a point at which it was appropriate to take Nicholas outside to see if he would calm down a bit. Now, let's not mistake.....this is not because I was "embarrassed" by his behavior. If any of my kids were creating a scene such as this, Autism or not, I would feel it my civil duty to act in the same manner and remove my child from the situation for the benefit of the other diners. This is just my personal approach to family dining, and my opinion of proper unwritten restaurant etiquette.
At any rate, this night, it happened to be Nicholas. So he and I stepped outside for a few minutes, and his fit continued as my dinner sat cooling off on the table to an inedible temperature. My husband, on the other hand, eats like a tornado moving across Kansas, so by the time I came back in with my temperamental boy, he was almost finished eating. We agreed that it would be best if he just take Nicholas to the car, while I ate my dinner, paid the bill, and rounded the others up for the journey home. All the while, this couple eyeballed us a couple of times, but did not seem particularly irritated. Who knows, maybe they were just being polite. So, I finished up my dinner, quietly (and still sweating!), with the other two at the table with me. I began to pack up our things, and recover from the stress of this entire situation which had only been exacerbated by the fact that we now had witnesses. As I wondered to myself if these innocent bystanders would be cursing us after we left, I glanced over at them with an apologetic look. And here's the funny part.....they did not notice my glance because they were in some sort of discussion with each other. And this discussion was in the form of SIGN LANGUAGE!!! OMG!!! It hit me like a brick that these two people had not been disturbed in the SLIGHTEST by our crazy table! They hadn't heard a THING! It was probably the most unlikely thing that could have happened at that moment, and the irony of it was hysterical to me!
After the humor of it all passed, it did make me think. We all have our challenges, but in those challenges, sometimes there come benefits. Nicholas may have Autism to struggle with, but with that will come his special abilities (like being able to spell at age 3!) that won't come so easily to other kids. For this couple, their challenge was adapting to living with their hearing loss, but thankfully for them, it also spared them a potentially very irritating dinner on the town! See! Every cloud DOES have a silver lining!
Meet the Family
Well, now that I've gotten a bunch of the emotional blabbering out of the way, I figure it's a good time to get everyone up to speed on the CURRENT picture of my family. Now, when I say "picture," it's going to be a verbal description, because trying to capture all three of my kids in one photograph would be beyond miraculous. (OK, I stand corrected....we actually got one today!) Anyway, Mom (that's me) Dad (hubby) and the kiddos all live happily together in a modest home in Michigan. Nicholas is now 3 1/2 years old, and despite not being verbal, has quite the silly personality on him. He laughs at things we don't even see, and loves his blocks, puzzles, and anything with letters on it. He also enjoys Yo Gabba Gabba, Word World, Sid the Science Kid, and long walks on the beach. (okay, just kidding about that last one, but we haven't actually tried that yet, so maybe it's true!) Avery is my spitfire 18 month old. She is as cute as a button, and as sassy as a 13 year old. She is my little helper, and enjoys doing anything that mommy is doing, or simply throwing food, blocks or anything else she can get her hands on from her high chair onto the ground. She is a very dramatic little girl, and she will most definitely run the show when it comes to her brothers one day. Brody is my tiny (or not so tiny) four month old man. He is my little smiley "tank," as we lovingly refer to him, and he is currently perfecting his skills of reaching, rolling, and doing his version of "crunches" every chance he gets. The three of them keep me hopping, and there is rarely a quiet moment in our home. My husband Chris is an awesome, involved daddy who loves all of his babies, and is my biggest support system. We operate as a team in our home, and while I generally create the processes that run our household, he helps me implement them. There is no way in this world that I could do this by myself, so kudos to all of those single mommies and daddies out there who do it every day. Special needs children or not, parenting is so challenging, and in so many ways that I could never have understood until I had my own. Without my husband, I would probably crumble to the ground most days (and even with him, I do some days!)
From the outside, I guess we look like the "typical" American family, whatever that means. Our kids are the center of lives, as they should be. Every day with them is a day that I feel lucky (ok, if I'm being honest, maybe not EVERY day...but most days!) And reflecting here on Mother's Day, I can say that I feel so blessed to have my happy little family. Sure, we have our trials and tribulations like all of you, and some days I need to just get away, but NEVER do I truly feel like I would want it any other way. My kids are what have given me direction since their birth. Some say they are still trying to figure out what they want to be when they grow up, and until now, I wasn't sure either. But since the birth of my babies, I know that I was meant to be here for them, and thanks to them, I have a real purpose in life. They have reshaped my world into something I could have never imagined. While three in diapers is challenging, and adding to that, one dose of Autism, I look forward to our undoubtedly bumpy but exciting road ahead because we will all be TOGETHER! Happy (belated) Mother's Day to all of you mommies out there who undoubtedly feel the same way about your babies as I do about mine!!
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