Fifteen Things from My Head to Yours

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Drug Trials and Tribulations

At last, a post dedicated to Nicholas' drug trial.....we've only be a part of it since May, so I've only procrastinated a tiny bit!  I guess I should explain from the beginning, so here goes....

Once upon a time, not long ago, Nicholas had a primary diagnosis of Hypotonic Cerebral Palsy.  This is basically a blanket term to describe his motor delays (like the fact that he didn't walk until almost age three, among other more subtle but notable things.)  Now, when we first heard this diagnosis almost 3 years ago now, I was confused, but a little relieved because at the time I thought this explained ALL of his issues personality "quirks," and that this was going to be the end of our search for what exactly was going on with him. For example, he has a severe aversion to foods that are not familiar, he doesn't like to put his hands in a mid-line position, he likes to spin and hang his head upside down....etc. etc. etc. When he was a baby, he constantly arched his back, and had very low muscle tone, and had (and still does) an array of sensory issues.  It was explained to me that these various "quirks" could all be a result of the CP because often the brain does not fire correctly, and this can manifest in a million different ways (despite the fact that his MRI showed no physical brain damage.)   At any rate, we accepted this diagnosis at the time, and took the recommendation of the doctors to pursue physical, occupational, and Speech therapies for his various issues.

We did these things diligently for a little over 3 years, and during that time, his biggest accomplishment was finally learning to walk.  It took a lot of our (and his) time and dedication, and along the way, I endured 2 pregnancies and births of new children in the midst of these hundreds of therapy sessions. It was a crazy ride.

Because CP (in our minds anyway) implied that most of his issues were to be physically related, walking was one of our main concerns, and we were elated when he began to finally walk on his own, learned to get up from the ground into a standing position, and do all of the things that he should have been doing related to walking in the previous two years. However, after the walking goal was achieved, my focus for him began to shift into teaching him to provide some kind of functional communication to us of his basic needs. My belief, at the time, was that the low muscle tone (related to the CP) was the reason he was not able to talk.  I did not even let Autism enter my mind.....until we made our annual doctors appointment with our physiatrist.  I will never forget the blow to my head and heart, when after he witnessed and celebrated Nicholas' new skill of walking for the first time, that he said bluntly to me, "I think you will find that most of his issues down the road will be less physical, and more cognitive." I froze....I couldn't even ask what he meant by that, because I was afraid of what his answer might be.  As I had been told a million times before, there is no crystal ball to see where his future will lead, so we can't tell you the extent of his disabilities, and basically, good luck with that.  It just plain sucked (and still does.)

After this visit, I started to read about Autism.  Obviously, at the age of almost three, with no voice,  this concern had entered my mind and I finally felt ready to acknowledge it.  Though part of me had suspected this long before that moment, my feeling was that even if his diagnosis was Autism vs. CP, the therapists that he sees would treat the symptoms, not the diagnosis. (In fact, that's what they all told me when I would mention getting him evaluated for ASD.) In other words, I felt that we were already getting him all of the help that he needed, and further, insurance would cover it under a CP diagnosis, and unfortunately this is not true under and Autism diagnosis.

Fast forward to this May.  Leading up to this point, my concerns about Nicholas' language had grown exponentially, and I had been reading non-stop about Autism and ABA Therapy, which is the only scientifically based therapy approach proven to help those with Autism. (this is not to say that other therapies don't help other kids, but just that this is the only one that has research and data to back its success.)  There was no doubt in my mind that he fit the bill for the diagnosis.  However, the evaluation for Autism is extremely expensive (sometimes in excess of $3000), and the therapy runs anywhere from $40,000 to $60,000 per year....and it is NOT currently covered by insurance. So, what were we to do???

Well, I had heard of a local and well-known neurologist in the Autism community who often is involved in research studies for autism.  I decided we would start there. Upon arriving, he did a full interview with us, and observed Nicholas for several minutes before making his recommendation.  He said that his wife (Mrs. PhD) was currently conducting a drug trial on Autistic children between the ages of 2 and 6 years old. He felt this might be a good option for Nicholas, because not only would he have a full and very thorough evaluation for autism (at NO CHARGE to us!!), if they qualified him for the study by diagnosing him with Autism, the drug that these kids have been taking now for about 3 years (we were at the tail end of this study) has been extremely successful in the areas of social skills and communication, which are his two largest areas of deficit.  Without boring you with too many of the details, the drug acts as serotonin (of which Autistic people tend to have low levels in various parts of the brain,) and helps to stimulate the specific neurons responsible for social behaviors, cognitive and communication abilities. Things like attention and focus improve, eye contact, and reductions in repetitive behaviors (like in kids who rock or flap) have been observed.  The doctor even noted that in some children who had only two or three words before taking the drugs had begun speaking in full sentences within weeks of taking it.  We sat in awe as we listened to the doctor. Sounds too good to be true, right?

This was, perhaps, the very first time in our entire journey that I left a doctors office filled with hope instead of drenched in tears and anxiety.  I called the study coordinator immediately after walking out the door of his office, and we had him scheduled for his evaluation, which included the various standardized tests administered by a psychologist for Autism, as well as a full physical, blood work, and a PET scan.  This was no joke!  In fact, this was much more thorough than any eval we could have paid for.  At the end of the 3 hour visit of evaluations, and our second half day visit to conduct the pet scan, the psychologist entered the small hospital type room where we sat with Nicholas, who was contently watching  PBS on the television mounted on the wall.  My anxiety was high....this was it.  We will know once and for all what his diagnosis is, I thought to myself.

She chose her words carefully, and as she handed me the Autism Speaks "First 100 Days" kit, she confirmed what I had, yet again, suspected for months.  I think she expected more of a reaction from us, but for some reason, in that moment, I simply took the thick packet of information about Autism from her, and nodded for her to go on.  She explained his test scores, and said that he qualified under every test as having a diagnosis of Autism, and as a result, they would be happy to accept him into the trial.  My emotions were very mixed at this point, but I think because of the hope that the neurologist had given me, to have a diagnosis such as this made at the same time as being offered a nugget of hope that a drug might be able to help, him changed my reaction significantly from what it would have been had we just gone to a clinic and been told "Yep, he's Autistic.  That will be $3000 please. Thank you and have a good life."  That is basically how I felt his diagnostic process had been up until this point.  Short, sweet, and with no direction or hope.

The caveat to this story is that while Nicholas was accepted into the study, it is conducted in a  double-blind fashion, which means that we do not know if he is receiving the medication currently. His possibilities were to receive one of two different doses, or a placebo.   In the first weeks of the study, I (and others) did notice a significant increase in his ability to be attentive, and much improved eye contact.   I still see these things, but since then, I have not noticed many differences since he began the drug. (He is definitely not speaking in complete sentences!)  However, having begun his ABA therapy concurrently, I see drastic improvements in him in general, and perhaps it is because he is able to focus better due to the drug, and the one on one intervention of the therapy keeps him engaged long enough to learn. Or, maybe I'm imagining it all, and he's on the placebo.  We may never know.  However, beginning next week, the voluntary portion of the study begins, which means that he will definitely receive the drug (if he isn't currently already) and we just will not know his dosage.  This phase will go on for 6 months, and you can bet I'll have my extra-sensitive eyes on him watching for any changes.

At the end of the day, I think that this is a great opportunity for our family to help do our part in finding a cure or at least a treatment for Autism symptoms.  It was a difficult decision to put him in the trial, not knowing if he would even get the drug for the first six months. This was because the doctor who recommended us to this trial offered to simply put him on the drug under his care if we wanted to be sure that he was receiving it as soon as possible (rather than wait it out for the first six months of the study.)  At his age, timing is critical, and the earlier the better in terms of receiving the drug (so says the doctor. )  But we opted to try and do our part for science, because it is important, and it is the right thing to do.  Time will tell if this new phase of the trial will show marked improvements in his symptoms.  It's just a wait and see game. And the fact of the matter is that there is no miracle cure for autism (YET!  I will keep hoping!) Until then, we will give him his medicine twice a day as prescribed, and pray that someday, somehow, this will help him or someone else.

***The big scary PET scan machine....he took it like a champ!****

Walking for Autism

Last weekend, our family ventured out to Auburn Hills for the 6th annual Walk Now for Autism event. We found out about it only five days before the walk, and the idea was to raise money for Autism research by soliciting donations through their website.  Since we were so late in the game, Chris and I set up our web pages, and posted on Facebook, and sent emails to various people letting them know about the walk, and asking for their support.  Given that we only had 5 days to raise money, we each set our initial fundraising goals at about $300 each. By this time, some of the top teams had already raised around $5000, and had started weeks before.  We figured ours was a reasonable and modest goal to try and meet in only four days.

We were astounded and humbled  after our 5 day window passed to have raised $2360 for Team Nicholas!!  We far exceeded our goal, and were actually in the top five of all teams who walked. I don't know how many teams there were, but I would easily say at least a hundred of them, maybe more. This absolutely amazed us, and not only did we feel good about being able to help support this cause for all families with Autism kiddos, we also felt very loved and supported by our friends, families, and even mere acquaintances.  This was just another notch, in the seemingly growing belt, of positive experiences in having a child with Autism.

The walk itself was a very nicely done event. They had "team photo" opportunities, which of course we took advantage of. It's rare that I can get my whole family in a photo at the same time, and this may very well serve as our annual family portrait for this year. :-)  They had bounce houses, face painting, food, drink, music, speakers and several booths set up about resources available to families who have special needs children.  The environment was full of energy, and full of families who you felt immediately connected with because you knew that they understood what your own family goes through every day.  There were so many kids, and though there weren't many that I witnessed, the melt-downs went unnoticed, or at least understood, which is a refreshing feeling for anyone who has experience with this little "gem" of Autism.

There were two speakers who were adults living with Autism.  Listening to them speak gave hope to the families, and inspiration to keep fighting the fight.  One gentleman was a 23 year old who was diagnosed with autism at age 4.  He spoke about how his parents were told that he would never make it through high school, and would likely live in an institution of some kind by his adult years.  He spoke very clearly, and frankly, you would never know that he is dealing with Autism.  He proudly told us about how he heard the words of the doctors, and decided that  he would prove them wrong.  He not only graduated from high school, but attended Michigan State University, played on their basketball team, and walked across the stage to receive his bachelors degree in Sociology.  I came away from this  story knowing that while Nicholas' future is unknown,  so was his.  But his parents pushed, and he worked his ass off,  and the reality of his outcome helped me keep my sights and spirits high about our future.

We had a great time walking around the palace grounds with our little family.  And though we started with a stroller (for Brody) and the wagon (for the older ones,)  Nicholas and Avery ended up walking most of the entire mile!  It was really a cool and fun day, and I'm glad to have had the opportunity to participate.

 To those of you reading this who donated, we are eternally grateful.  It means so much to us to know how much love and support we have around us. And whether or not the puzzle of Autism is solved in our lifetime (I pray to God that it is,) your donation will surely benefit so many families at some point down this long road of research.   And to those who may not be in a financial position to support us in these types of events, we feel equally as grateful for the gift of time, kind words, and cheer leading that we receive from you through various outlets...emails, facebook, and by knowing that some of you read this blog.

I truly feel blessed to know the people that I know, and I am grateful to have been given the chance to see, through our "walk with Autism,"  how splendid humankind can really be.

New Routines, New Attitudes

So we are embarking upon our first week of our real new schedule.  What do you I mean, you say?  Well, until now, we've had a hectic routine of random therapy appointments (different days, different times) and drug trial appointments (oh yeah, I keep forgetting to write about the drug trial Nicholas is participating in...stay tuned), my "neruo-typical" kiddo surgeries,  follow up appointments,  brace fittings,  and somehow trying to fit in some fun where we can.  Well, finally we have begun the school year in full swing.  And I have to say, I am LOVING it (all two days of it so far!) And here is why.....

This morning, I woke up, got the kids dressed, fed, and walked Nicholas to the "big boy" bus (that comes right to my driveway at 8:15am...thank you tax dollars and tax payers....know that at least SOME of your money is well-spent.)  I then headed to the gym with my two "tiny people" (Avery and Brody.)  This is one of their favorite things to do, and it makes me feel good because they have exposure to other typically developing peers (OMG, there I go again sounding like an educator instead of a mom....oh well, occupational hazard I suppose er, something like that.)  They get to play with different toys, roam around a completely child-safe room, and wear themselves out exploring a new environment.  In turn, I get to take two solid hours to myself. I generally use this time to work out, TAKE A SHOWER...I repeat, TAKE A SHOWER (this is something that any SAHM or SAHD of any young child/children can appreciate!) and maybe even have a few extra minutes to myself to watch an episode of 'Weeds .' Yes, I'll admit it...today, I finished my shower early, and sat on the couch and watched an episode just because I could.  Go ME! (Great show, by the way!)

Anyway, I picked the kids up by 11am, took a leisurely drive through the McDonald's drive through where I ordered my large Diet Coke (I do not apologize for this people...it's one dollar, and it's a great bargain!) and drove home.  I then, in a very relaxed state, prepared lunch for Avery, Brody, and Nicholas (in preparation for his return home on the bus, of course.)  Now, to further elaborate on this, normally by 11am, I am already burned out from trying to feed people, change 3 diapers at a time (nope, Nicholas is not potty trained yet...one thing at a time here) taping Nicholas' fingers (a feeble attempt to keep them out of his mouth,) getting diaper bags ready for our morning appointments or school, administering medicines, cleaning messes,  loading the van with kids, and keeping Brody from screaming his head off because I can't pay enough attention to him at the same time that I'm trying to do everything else....eye yi yi!!!

By 12:30 lunch is finished, we all play for about 45 minutes, and then it's off to therapy.  I take all three kiddos, but it's a short ride and they are gracious enough to come and get Nicholas from the car when I arrive so that I don't have to unload three children from car seats simply to drop him off.  It's fantastic, and you can't imagine how this simplifies and streamlines my process.  Let's face it....an infant seat alone weighs about 15 lbs, and add my Chunky Monkey into the equation, and we're talking close to 40 lbs just to lug the thing in and out of the building for 3 minutes for a simple drop off. Not to mention that I have my little runner (Nicholas) and my little dare-devil  (Avery) to corral during this process of entering and exiting venues.  And yes, I am due to upgrade to a rear-facing convertible car-seat so I don't have to carry that heaving thing around, but once again, one thing at a time here!! I digress....

After the drop off occurs, we have a nice calm ride home.  Upon arrival at our "casa de Cser," Avery helps me "put Brody to bed," which I'm amazed that she hasn't figured out (or at least doesn't refute ) that this also means that she is going to bed.  Both kids are in bed by 2:00 pm, and I am...well, I am in a house of complete silence.  I can't tell you how refreshing this is. I make a point to not turn on the television....I don't want to hear the constant noise pollution that I hear all day every day.   There is no Sesame Street, no Yo Gabba Gabba, no crying or "talking" children,  and not even my own guilty pleasure shows (er, Housewives of ANY city...yes, I'll admit this to the world) and I cherish the silence so.

When 3:30 arrives, Brody has been awake for a while now, but I begin the process once again of providing fresh diapers, milk, formula, snacks, etc, and we are out the door again.  However, by this time, I have had at least another 45 minutes to myself to get dinner started, or check FB, or whatever the heck I want to do....wow, I LOVE nap time!

We arrive to pick Nicholas up, and here's the best part of my new day.  He comes out, grinning EAR TO EAR when he sees me, and I hear nothing but POSITIVE things about what he's done during his time at therapy.  They are doing what I could never do in those two and a half hours at home with the other little people in the picture, while simultaneously trying to also maintain a home.  He's doing so well, accomplishing goal after goal, and I hear about it each time I pick him up in the afternoon.

So do I feel guilty about not having the opportunity to spend the time with him like I did last year?  No, I don't. A little sad, maybe. But this is what he needs, and it's paying off.  And further, we are ALL happier for it.  I am a better mommy to each of my children because of it. I'm less stressed, and so thankful for the progress that he makes every day.   In three years of therapies, I've never had so much positive feedback, and I can't help but think that we've found a small way of unlocking the door to  the little man inside of him.  The subtle changes in his behavior, like grabbing my arm when I'm not paying attention and he needs help on his Ipad, or looking directly at someone when they walk into the room are all I need to know that we are putting his puzzle together...one piece at a time. I also realize how frigging NUTS our daily life was before this new routine started.  I would never minimize the days' of any parent who stays home with their children, but I feel that I'm finally getting my first taste of what it might be like for other parents who do not have to cart multiple children around to 50 million appointments each week....and it's not so bad!!  It has been a circus, and I knew it before, but I really  know it now.  The bottom line is that this is good. It's all good, and it's going to keep getting better!!!

And, here you have it, a  GOOD day in the world of a special needs mommy.....:-)

I.E.Phew Part II

The school year has begun, and so have the routine changes.  After a summer of erratic therapy schedules, back surgery and recovery for mom, and lots of fun in the sun at the pool, I think I'm ready for the fall.  However, the one thing I have been dreading was the daunting IEP meeting that was scheduled for this week.  Another IEP you ask?  Yes, we had one in June, but because we were requesting that his school certification be changed to ASD (Autism Spectrum Disorder) from ECDD (Early Childhood Developmental Delay....see, I told you I was learning a brand new language!) the process had to happen again under his new certification. (which to the lay-person, is basically the school's diagnosis which helps to determine which educational setting is best suited for his specific set of challenges.)

We are faced with a challenge because our district does not currently offer ASD services at the pre-school level, which unfortunately is the most critical time of learning for these little guys and gals.  (See I.E.Phew Meeting Part 1 for details in case you missed that one...) Additionally, with his new certification of ASD, he is eligible to be in a setting that has no more than 6 students to 1 teacher and 1 paraprofessional.  The significance of this is that in this setting, he would obviously receive much more one on one time from the teacher and para, and through his ABA intervention this summer, it is apparent that he is much more capable of learning in this type of environment than in a larger group setting. Unfortunately for him, his current preschool classroom can house up to 12 special needs children of varying degrees, and it is extremely difficult to meet his individual needs with so many other children to teach and care for.

As a parent, it was a very difficult thing for me to decide that I want to fight to have my child essentially segregated from his classroom population to be isolated in an environment where there will likely be very little social interaction. I mean, in the end, isn't that one of the goals of pre-school?  To help to socialize a child before Kindergarten? To get them ready for classroom routines, schedules, and structured group activities?   It's a big decision.  Some parents fight tooth and nail for just the opposite. They feel their child would be better off learning from their typical peers in a typical classroom.  Therein lies the big dilemma....which is the better choice? And in our case, will the school support my wishes for my child whether I feel strongly one way or the other?

Whether a parent feels that inclusion is the most appropriate way for their child to learn, or if individual instruction would be best really only weighs in partially in the decision making process.  The school ultimately has the right to choose where your child will end up, and this is based on many factors, which unfortunately include (but will never be discussed because it is against the law) financial implications.  On the flip side, if the parents and school cannot come to an agreement, then it is the parent's right to request a hearing, and a long, stressful and often discouraging battle can ensue between the family and the school district.  Opening this Pandora's box not only can result in a losing battle, but it can damage relationships between families and school districts, which in the end can really make things difficult for families, and worse, for the child as he progresses through his school age years. (to clarify, I do not mean to say that he will be treated poorly as a result, but just that each year, the damaged relationship may make it more difficult to secure the services that the child needs.)

These are things I did not know before I had a special needs child.  (There you go again Nicholas...slyly making mommy learn a LOT of new things about the world!)  Throughout the summer, I had such anxiety about this meeting, and what the outcome would be that I could rarely put it out of my mind.  The goal of an IEP team (which consists of the school personnel, administration, and parents) is to thoroughly discuss the child's strengths and weaknesses, and truly decide what the best programming for him/her will be.  But to muddle  this process further, there are laws with which the school must abide  (for example, educating a child in his "Least Restrictive Environment" or LRE as we old pro's refer to it) and it is not always financially feasible (due to funding or staff availability) to take a child out of this environment into a more secluded one that may best suited for his or her needs. The bottom line for us is that I want my son in an ASD specific classroom, which would require the district to send him out of our district to another school.  This costs money and requires resources that they probably don't have. I recognize and appreciate this. After all, the school is a business, and they have their own issues to deal with.   However, by law, they are required to provide him with what is referred to as "free and appropriate education" (or FAPE, again as we pro's call it...) and of course their preference would be to try and do this within their own classrooms, with their own resources.

So, now that you have a mini-background on the issues, let me tell you about my experience.  I will admit, that going into this meeting, I had very low expectations of being able to come to an acceptable compromise.     Despite the fact that we have had a very positive experience with his educators and therapists in our school district, as a parent of special needs, you hear and read nothing but horror stories about how these meetings will go.  I have read so many accounts of parents not knowing their rights, and being basically bullied by school districts into complying with their recommendations that may not have been right for their child.  I have also read about situations where the school district staff appears to be open to a parent's opinions or wishes, only to railroad them in the IEP meeting which usually results in the parents backing down from what they know their child needs, or pushing on with a stressful lawsuit.  Now, I like to have a little more faith in people than this, and generally I do.  However, I had NO idea what to expect when I sat down in our meeting this week because of some of the stories I've heard. I arrived armed with law books, key phrases, progress reports, and data, data, data.  As much as I was trying to keep an open mind, I was ready if I were to be attacked.

Much to my pleasant surprise, it turns out that things were not as ugly as I had anticipated they would be.  Did I get exactly what I asked for? No.  However, after 3 1/2 hours of discussing my son's goals for the year, and what we need to do to meet them, we came to an agreement that he would have a special schedule put in place for him in his current classroom, which will  theoretically provide him with the additional one on one time that I know he needs.  We compromised that he would try this out for 60 days, and reconvene to discuss whether or not the staff was able to truly devote the time he needs (because let's face it....they have a LOT on their plates as it is,) and to measure his progress over this period.  If we determine (together) that his educational needs are not being met in this environment at the end of this trial period, then we will discuss other options for him.

I have to say that though this wasn't my ideal situation (because of course, I would have loved for them to say that they would just go ahead and put him in an ASD classroom that is already established somewhere) I am pleased with the outcome.  I truly felt supported by the IEP team, and I can also respect the process enough to understand the actions that are being taken.  I walked away from the meeting knowing that for these educators and administrators to spend 3 1/2 hours of their day discussing the needs of my son when they have so many other children to manage, that they truly do care about him and want to do the right thing.  Everyone was very honest about what they felt he needed, and what they could provide for him, and that is the only thing I can ask for.  I feel very lucky to have my son in an environment where, despite whether or not his needs will be fully met, the educators are going to do their damnedest to try.  And I will not fault them if it doesn't happen, because I understand the challenges that they are faced with daily, and how much more attention my son requires to learn.

Only time will tell whether or not this is the right place or him, but I feel good about my relationship with the school, and I am grateful for the educators we have in place there.  Everyone has their limits given the time and resources that they have available, and I am not entirely sure if this will fully work out for him, but for the sake of compromise and being reasonable, I am willing to try.

As a side note and a conclusion to this post , I want to say to all of you special education teachers and to anyone who works in the field that it takes a very special kind of person to do what you do (not that you need me to tell you that....)  Many teachers take on more than they can handle, and I can speak to that from hearing so many of my teacher friends talk about their work, and knowing their caring personalities and how much of themselves they really do give outside of the classroom environment to their kids. But special education takes a different type of patience, and an unique ability to connect with students and parents.  There are so many politics that can impede, and my hat is off to those of you who are able to still focus on the students and how you can enrich their lives, despite the peripheral factors that can affect this. Thank you, from the bottom of my heart, to all of you reading this who have been so supportive of my family and in particular, Nicholas (you know who you are!!) Words can never express my gratitude for your heartfelt words and encouragement when it comes to his progress and achievements. He wouldn't be where he is today without your persistence.  And to those out there who do this for other children every day, I have the utmost respect for what you do each day, and I want to thank you for devoting your time to every child who crosses your path.  They need you, and  the world needs you!!

Gearing Up...

Well, clearly I have not maintained my goal of trying to write at least once a week.  Right now, with our hectic routine, and a small, beautiful, bouncing baby boy  who does not particularly like to sleep or be put down, I guess it was a pretty lofty goal.  As summer comes to close, I figured I'd try to squeeze one blog in here to sum up our crazy, but fun summer.  (Let's see how many days it takes me to actually COMPLETE this...)

(5 days later.....)

So, I had planned on dedicating an entire post to Nicholas' new ABA program, but time has gotten away from me this summer, so I will try to touch on some of the highlights of his program.  He started in June with an awesome therapist. I cannot say enough about this place, and how well he's responded.  For those who know very little about ABA, I suggest you Google it for more information because I don't think I could do it
 justice by explaining it in my blog in this limited time frame I have.  However, in a very, very tiny nutshell, it is all about rewarding positive behaviors, and ignoring negative behaviors. Programs are tailored to each child, and the goal for Nicholas is to encourage and facilitate communication.  The "work" is done at a small toddler-sized table, where they use things that motivate Nicholas specifically (in his case, his IPad with music videos,  DVDs of Yo-Gabba Gabba, or containers of pudding.)  The goal is to teach him how to request these items using sign language, or whatever works for him, and also to complete certain specific tasks when asked (for example, 'hand me the shoe,' or DO THIS: and a behavior will be modeled for him to mimic.)  It is so simple that it's complicated....anyway, like I said, if you really are interested, you can even watch youtube videos of therapy in action. I may actually post a few of Nicholas on my blog when I figure out how.  Anyway......(7 days later....ugh....)

Day One, I was leery.  This kid will not sit still at a table for three seconds, I'm thinking. Given that this is the whole foundation of the therapy, I had concerns that his would be our stopping point before we even got started.   We have to buckle him in to any seat he sits in (like for meals and school activities) in order to force him to stay there long enough to complete the activity, whether it be lunch, or circle time in the classroom.  Fast forward 6 weeks, and Nicholas is not only sitting in the chair, but coming to the table voluntarily and sitting appropriately for as long as required to complete whatever the given activity.  He has now accomplished several of the goals that were set for him, including sitting at the table (duh), stacking rings on a peg (an activity usually reserved for around age 12- 18 months, but he would not even PICK THE RINGS UP before we started,) and....(drum roll please)  signing for when he wants to watch a movie!!!  This is huge in and of itself, but also because he has an aversion to putting his hands together, and the sign for "movie" is basically rubbing your flat palms together. When they first started this with him, I was thinking, never in a million years will this be the first sign he learns.....but guess who proved Mommy wrong!!!???

There are so many other things to note that could take me all day, which include better focus, more eye contact, initiation of interaction, etc etc.  Let's be clear....he still has a MOUNTAIN of obstacles to overcome, and a lot of things to achieve, but this is the first time in almost three years of various therapies that I have actually felt that there is hope for him to really begin to move past some of the limitations of Autism, particularly with regard to his communication skills.  Along with that, we have secured a fantastic speech pathologist who visits our home once a week.  He does not use ABA teaching methods, but instead is focusing on teaching Nicholas functional communication skills using his new IPad.  I cannot even begin to say how impressed I am at how quickly  Nicholas has "taken" to the IPad.  When first introduced to it, he was not really using his pointer finger consistently to make choices or otherwise.  However, now, he will not only point to which game/video/etc he wants to watch, he also is beginning to explore navigating through the applications himself and can even play several of the spelling and matching games with little or no assistance.  He absolutely LOVES it, and I can barely tear him away from it at times.  (Though, Avery manages to do this from time to time on her own!!) While it functions as a learning tool for him, it also has become a favorite pastime of his to watch One Direction (yes, the boy band....don't ask...) videos, among other Top-40 artists (whose music must be mommy approved!) on his new little device.  This has actually made dinners out easier, because he will generally eat pretty easily as long as he's distracted with a video, or "movie" as we now refer to them since this is the sign that he has learned. Yippee!

The bottom line is that much progress has been made, and I am excited for Nicholas to not only continue his ABA program, but also increase the time that he will be spending there beginning next week from only 4 hours a week to almost 12 hours a week!  He will have quite the schedule,  attending pre-school in the morning, and therapy in the afternoon. He will, for all intents and purposes, be gone until 4pm with the exception of a brief hour that I will have with him at lunch.  I feel sad and excited about this at the same time.  I can't believe how fast it's happening, and I'll miss seeing my little man during the day. However, this will give me peace of mind that he is getting what he needs in order to continue learning and progressing, and will allow me to spend some quality time with Avery and Brody which will be time dedicated ONLY to them.  In one sense, it will "normalize" my parenting experience.  I will not be constantly dragging all three kids around to therapy waiting rooms every other day.  I will be able to do activities with the younger ones that were never an option because we were always getting ready to leave to go somewhere, or already somewhere other than home.  I have to admit, I'm excited at the prospect.

We shall see how Nicholas holds up to his new schedule, but I have every confidence that he will do superbly!  AND, as an added bonus, maybe his sleeping will improve!?!?! Further, maybe my mental state will improve.  Actually, it already has.  I'm so glad that we've made this choice for him, and just hope that the progress continues steadily!!

That's all for now, and thanks for reading our story.  Oh, and I did just figure out how to add a video of Nicholas' ABA therapy. (CLICK THE LINK BELOW TO WATCH)  It's a long one, but even if you watch only the first few minutes, you can get an idea of how this intervention works (and if you are super interested, then you have about a 15 minute video clip to watch because I don't have time to figure out how to edit and shorten this at he moment.)  Just keep in mind when watching, that when we started this, he had none of the skills shown in the video (placing puzzle pieces, stacking rings, etc) and this was only about 6 weeks prior to when this video was taken.  Can't wait to see what else he shows us!!  Thanks for reading and watching!

https://www.dropbox.com/sh/iio8650l3x92q9p/8VZMKpCCRF/9.14.MOV

What a Difference A Year Can Make

This week, I had the pleasure of watching my son in his new (well 6-week in) ABA therapy program.   I had missed a few sessions, and was amazed to see the significant improvements that he had made in only the three sessions I had missed. At some point, I will post in more detail about what these improvements are, and what ABA is all about, but sitting in on his session yesterday made me really think about how far we have come.  For so long, our biggest goal for him was to walk.  We weren't sure it would ever happen, but never lost hope in therapy and his efforts to try.  It took a LONG time, but finally, last summer (almost a year ago exactly,) Nicholas took his first steps across our yard, and brought us to tears.

Now, a year later, we are setting goals for communication.  This process can be long and grueling, and seems so overwhelming since he has to learn in such a systematic way.  I often wonder if it will ever happen, and how long it will take until we will hear his sweet little voice.  I get scared that sometimes it won't ever happen. Only time will tell.

But this week, after thinking about how far he'd come since just last summer, I decided to look at some of his old videos.  After watching them, and realizing that he had made so many gains this year, it gave me hope for his next goal of communicating.  I decide to make a little video montage to celebrate his one year anniversary of walking, and to remind myself of how long it took, but how determined he was, and to keep the hope for all of his future goals.  

So anyway, that said, here is a little journey I'd like to share.  And as a side note, I write this little entry with three children making noise, and hanging off of me, so I apologize for this not being perhaps my most prized literary masterpiece.  I hope you enjoy the video, and remember that good things come to those who wait!!

Nicholas' Journey to Walking! Click This to View Video!

A Tribute to Brian

It has been a while.  Between back surgery and technical issues, I have not been able to write.  In this time, I have been thinking of a million topics to share, and where I would start.  However, today, with a very heavy heart, I am writing for someone else in lieu of any of these other things that have crossed my mind in this time away.

Children, no matter what the circumstances, are a blessing and an enrichment to our lives.  Young or old, as a parent, your children have changed, shaped, and enhanced your life.  They add a purpose, and a direction.  Once you have a child, nothing else matters.  You will do anything it takes to love them, care for them, and maximize their potential in life.  At times, I have been praised for all that I do for my son Nicholas, because he is in need of so much more than my other children. While I truly appreciate the sentiment, the fact of the matter is that most parents of sound mind would do the exact same things for their children.  It is just what you do.

While I have cried for my son many times, and mourned the loss of the idea of what I once thought his life would be, I have come to accept that this picture of his life may or may not look like what I had originally hoped for him.   We can never control the twists and turns of life, and having him has taught me to let go just a little bit.

However, today I am deeply saddened.  A child has been lost too early, and I hurt for his family. I cannot imagine the intense sadness and loss that they are feeling.  What some don't realize, with special needs children in particular, is that despite their "deficits" (whatever they may be), and the difficulties faced by both the family and the child,  these children also have personalities, traits, quirks, and their own ways of being silly, funny, loving, sweet, and happy. Despite the struggles and heartbreak that come with any life-long diagnosis of a child, that child still adds a dynamic to a family that is ultimately positive, and he still brings joy to the lives of his family in so many ways.

Often, when I write, I focus on the struggles of raising a special needs child.  But today, I would like to instead, honor Brian.  I didn't know him, and I don't know his family either. But Brian, by his own nature, has created a silent bond between my family and his. This is a gift that he gave us.  I have seen pictures of him, and have followed his story for only the past several months, but his battle has been life-long.   Though I've never met him or his family in person, I can tell you that from what I've read about him,  he was a fighter, and so are his parents. He had so many obstacles in his way, and it is apparent that he worked hard, with the help of his family,  to push past them.   I have to believe that in this process,  he taught his parents that they are stronger than they ever imagined they could be.  This was a gift that Brian gave to his parents.    Brian also has a brother.  And thanks to Brian, his brother will grow up to be kind and compassionate to other children and families who he encounters  who may be struggling with difficulties like his brother's.  This too is a gift that Brian gave this world.

In his time here on earth, it is clear that he has touched the lives of not only his family and friends, but  of perfect strangers as well.  I did not have the honor to know him personally, but feel blessed to have had the opportunity to know of him, and to learn from his journey.  My heart aches for the loss that his family, friends, caregivers, and others who knew him are feeling.  He must have just had that effect on people, because not even knowing him, I feel a loss as well.

Brian, thank you for enriching our lives.  May you be at peace, and be free of the pain and struggles that you have experienced here on earth.  You were once an angel to your family and friends here on earth, and you will remain an angel to them now from a different place.  As someone whose life you have touched without having met me, I feel honored.  I wish for you in heaven, freedom from your earthly ailments, and all of the things that you weren't able to enjoy in this world.  You will not be forgotten. Your memory will forever live on through your friends, family, and the many lives of those whom you have touched.

A Letter to Sombody....Anybody

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

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!

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.

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!!

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.

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!

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!!

Octopus's Garden

I'm going to get a little out of order here because today was such an extraordinary day for me (us.) To some, it may not sound like much, but for me, it was priceless. Today was the beginning of my first overnight (during the week, filled with our typical hectic schedule) alone with all three of my kiddos.  The morning started off fabulously, as for a change, Nicholas slept the entire way through the night. Now, I don't want to jinx myself for  tonight since I am alone all night with them all, but he has been waking from about 2am until 5 am, doing nothing but making noises and basically testing my instinctive mother's hearing abilities. Thanks to Nicholas, I have learned that I could NEVER sleep through one of my children's midnight wakings.  Thanks for giving me that boost of parental confidence kiddo!  Anyway, though we've tried a number of things to get him back to sleep in the middle of the night, we have finally come to the conclusion that nothing works, and we must just let him do his thing until he finally passes out. Sometimes this is comfortably in his bed, and other times it's sprawled out in the middle of the floor with no pillow or blanket.  I hate this, but it is what it is.   It's maddening, and it doesn't help that my 4 month old, Brody still gets up for his 2 or 3am feeding, and my beautiful Avery is QUITE the early bird, usually up by 6am. Talk about a couple of walking zombies! My husband and I sometimes take naps in shifts on weekends just to make it through the day.   In an act of desperation yesterday, I decided to try something new with Nicholas. Having heard of "music therapy" but not knowing a whole lot about it, I decided to buy some headphones  for him that would allow him to listen to my music collection wirelessly.  I have seen him show an interest in music, and he even recognizes some of my favorite songs (that I have a bad habit of playing over and over in the car....poor kids!) I thought maybe this could be a calming exercise for him since I've seen them do it in his private OT sessions and it seemed to be something he enjoyed.  Despite not having the correct equipment for actual "music therapy" per say, I was pleasantly surprised that when I popped the headphones on his head for the first time (well, with some resistance from Nicholas since he doesn't like to have his ears touched) and upon hearing the music, he immediately calmed, stopped putting his hands in his mouth (which he does incessantly,) and was smiling, and even laughing at the song!  Thank you Pandora Toddler Radio!!!

Then it occurred to me....why not try this during his nap or bedtime?  So, that I did.  After laying him in his bed, and doing our usual ritual (with a weighted blanket, stuffed puppy and monkey) I asked him if he'd like to listen to some music.  He looked me directly in the eye and had a little smirk on his face...I took this as a solid "YES!"  So, as it turns out, either Nicholas is a HUGE Beatles fan (Abbey Road, of course...it's all I could think of quickly from my music library that was somewhat mellow) or they bore him to sleep because after a few smiles and laughs during "Octupus's Garden," he placed his hands behind his head, and nodded off within 5 minutes!  I was astounded, since nap time, until now has been something like this:  lay him down, cover him up, turn on white noise machine, turn on ceiling fan, walk out of the room, walk downstairs, look at video monitor, find Nicholas happily standing on his head in his bed downward-dog style, return upstairs, and repeat process.  Good times, let me tell you. And usually during this time, Avery has already fallen asleep, and by the time the process ends (which sometimes includes me just giving up) Avery has usually woken up, and Brody is ready for action too.  This equates to ZERO quiet time for mommy.  However, it DOES also result in quite the additional calorie burn for the day, since I climb and descend the stairs about 1500 times by the end of it all.  Geesh....when we bought a quad level home 8 years ago, I figured the stairs are only an issue for the elderly.  Who would have thunk that they would become my nemesis when I had children....but I digress.

It remains to be seen if this technique will always work for him (us,) but on this day, it did, and I couldn't be more excited! I feel like I learned just a little something more about what Nicholas likes and needs, and when you don't have that experience on a daily basis, it is profoundly pleasing!   These are the moments that I treasure, and never take for granted. I look forward to the next one, and in the meantime, you can bet I'll be putting a playlist together JUST for Nicholas.