Tales from the Cser Crypt....A Night in the Life

Just had to share one of our, seemingly and unfortunately more typical, night/early mornings scenarios.  After all, I write this blog to give you a glimpse into our world, so here's a really awesome one....(dripping with sarcasm, but can you blame me? It's 4:35am!)

2:06am:  The night time dreaded "singing" from the boy's room begins. Nicholas has awoken....

2:15am: I nudge the husband to ask where the melatonin is in hopes of nipping this in bud before the wake up becomes permanent.

2:16am: Mutter several curse words in my attempts to find the melatonin in the pitch black of night.

2:17am: Locate melatonin in garden window of kitchen feeling hopeful that perhaps we will all have a fighting chance of getting back to sleep.

2:18am: Enter the boys' room to find Nicholas wide awake in bed with his feet banging against the top bunk, effectively bouncing his baby brother around in a pretty solid effort to wake him, but to no avail...whew!

2:19: Melatonin administered...and I make the mental decision to stay in the room until he falls asleep... just for good measure. 

2:27:  He's still awake, and louder now.....

2:40:  Yup, still awake...that's okay, this could take up to 45 minutes for melatonin to kick in, I reassure  myself...

2:55am:  Still going.....I decide to try his wrist weights which tend to calm him down.  Yeah right...good try mom, he sings. Instead of calming him, he begins smirking and while at least HE'S happy, I'm not!

3:00am:  I mutter a couple of exhausted and defeated expletives, and head back to my bed. At least Brody didn't wake, I think to myself.....an obvious mistake on my part.

3:15: The "singing" becomes louder and more aggravated. In a last ditch effort, I meander downstairs and search the living room for my headphones...not for me, but that might have been a good idea in retrospect....

3:16am:  I re-enter the boys room, start my white noise app on my phone, and clamp the headphones over Nicholas' head.  INSTANT CALM!!! YESSSS!!!!  I take a deep breath and see the silver lining of at least a few more hours of sleep before morning!

3:18am:  Nicholas begins kicking his feet against the top bunk again and taking swings at me....an awesome addition to sleep deprivation.  From above, I hear a tiny whisper "Mommy....I want to cuddle you....."  Sigh...here we go. It's all over now.  Brody has awoken.  I have a choice to make now....dash out of the room before he is awake enough to realize it, or acknowledge him risking an outburst when I try and go back to bed.   Decision made: I dash out, giving up on the entire situation and praying for a miracle.  

3:20: Brody exits his room, turns on the hall light which glares int our bedroom like  a flood light on a police car, and enters my bed, tossing and turning until he finds a spot that suits him just right...albeit with his skull pressed against my bruised nose from the headbutt I received yesterday. Perfect. But I'll take it, so long as it's quiet. I could sleep standing on my head at this point. 

3:25: I hear the pitter patter of Nicholas fleeing his room, heading down the stairs, and searching for his Ipad.  Oh well....no school today. He can nap later before we take him to Chuck E Cheese for his birthday later. Oh yeah!  Today is is birthday!  Maybe he just wanted to celebrate from beginning to end??? 

3:35am:Brody decides to ask me for Halloween candy, and upon my comatose response, takes it upon himself to head down the stairs, turn on all of the kitchen lights, and help himself to a piece to  bring back to my bed.  "Pick your battles," I think to myself. 

3:45am: Chris removes candy from Brody's hands, and himself from our bed.  Someones gotta work in the morning!!!

3:48am: Brody informs me that he's going to sleep with Daddy, which I know translates into going back to the kitchen to find more candy.  I silently debate how much I care if he ingests an entire pound of chocolate just so I can get an hour of sleep, and weigh the possible outcomes.

3:50am: I begrudgingly stumble out of bed again, head downstairs, discard candy wrappers from kitchen floor, respond to a request for a banana, and begin opening mail....why not? What else is there to do at this hour??

3:55am:  Make the final decision that my day has officially begun, and chuckle sarcastically to myself as I turn off the program button for the coffee pot (set for 6am) so that I can manually start it now. 

4:02am: Turn on Wonder Pets for Brody, and pour my first cup of coffee, decide to write this blog post, and then pay some of the bills that have been piling up.   Hey, if you can't beat 'em, join 'em I suppose!  At this point, I'm just thankful that no one is screaming!

So there ya have it!  Up and at 'em people!!!!!  Sleep is for the weak!!!! Until next time...

Breaking the Blogging Silence

It's time to write. It's been too long, and I have a myriad of reasons (aka excuses) as to why this hasn't occurred for the past several months of which I will spare you.  At this point, I'm not even sure where to start, and the topics for my "next post" have been swarming around in my head for months and at the most random of moments.  Today, I don't have a "topic" though, and just want to share a bit of our world lately.  I can't possibly touch on all that has occurred in the past several months, but I'll do my best.

I'll start here.  Nicholas is back in our home district for school.  I had mixed emotions about this at first, but promptly after he began, any reservations I may have had vanished.  In fact, I'm pretty sure that we hit the academic jackpot in terms of his teacher and classroom situation, and words can't express how elated I am.  He is one of 3 students in the classroom, and with the teacher and 2 paras, he basically has 1 on 1 attention all day.  It's amazing, and VERY necessary for him right now.

As for therapy,towards the end of the school year last spring, and just as we got him situated with a good routine and FINALLY all three (PT, OT, and SPEECH)  and great therapists, the center sent us a letter on a Wednesday, and closed its doors forever that Friday.  It was extremely sad on many levels....from the fact that we loved his therapists and would suddenly not see them again, to the fact that they were all now jobless without notice. And also, on the selfish level,  it was extremely frustrating from a practical standpoint, because now it is back to the search for a therapy center that has available time slots that fit with our schedule and his needs, AND he has to be evaluated and acclimated to new therapists ALL OVER AGAIN! Ugh.  This is not like just seeing a new doctor for an ailment.  There has to be a relationship established so that they can really see his potential and know how he ticks.  It's a very long process, and thus, I am still on the hunt 4 months later for the right people, place, and times.

As for our summer, it flew by. Nicholas had an opportunity to participate in a summer camp at no cost to us which was a huge relief.  To have him home sitting on his ipad with now ZERO therapies in place would have been a nightmare for me.  As much as I would like to say that when he is here, I constantly implement his therapies or make every situation a "learning" situation, it simply doesn't happen that way.  It's a little fantasy of mine, yes.  (my... how my "fantasies" have changed since Autism has entered my life....)  However, with the two younger kiddos running around who are still also very needy and demanding, it simply doesn't work that way.  I've tried.  Trust me.  And every time has been a disaster ending in tears and screaming.....and not just by my kids.  I'll leave it at that.

Nicholas is growing up.  We are working on potty training finally....thanks to his teacher.  In fact, I will have to dedicate an entire post to his teacher and how she has empowered me lately, but for now, I'll just say we are a good team, and for the first time, I feel that Nicholas will see some consistency between his classroom and his home.  This should help us all immensely.  That said, Nicholas is becoming more challenging to deal with.  Gone are the days when he was small and young enough to still "blend in" and here are the days of head banging, hitting me in the face, kicking, and a lot more disruptive behavior than he's ever had.   This too, deserves it's own post, as the emotional aspect of this is pretty challenging for me.  However, for now, I'll just say that I can remember the time when I would sit in the waiting room of a therapy center, see kids behaving this way, and thinking to myself "Gosh, that must be tough for the parents.  At least Nicholas isn't doing THESE things....."   What i forgot to insert into my thought was the word YET.  And perhaps I didn't know, or didn't want to know that this would eventually be the case, but it is now, and quite frankly, it sucks.

Nonetheless, with the negatives have come positives. Nicholas is learning to communicate with us, albeit in an extremely limited way. He is using the PECS system consistently at school for certain requests, and we are trying (AGAIN) to implement a functional system at home for him.  He is also learning to type on his IPAD.  I decided to give this a go (AGAIN) and he is finally beginning to type certain words with a bit of prompting and direction.  My goal is to have him independently open the app, type what he needs, and show it to me when not prompted, but for now, I'm happy with asking him if he wants some milk, and him typing the word milk to let me know that yes, he would like some.  Baby steps.  Baby steps......

As for the family as a whole, we have ALL done a lot of growing over the past several months.  Things have been very rough at times, and we have had some dark days, but in the end, I think we have gotten through some things that have challenged us and yet have proven that we will survive.....as a family!  Yep, that will have to be another blog post too.....


Okay, so that's it.  I've finally broken my "blog silence" and that's the first step.  Hopefully, I will get back on the writing train because as much as I have been told that others find it helpful to read, it is really helpful for me to share.  It keeps my mind clear.  So, as always, thanks for reading! Until next time....

The Long and Winding Road

Well, at last. I am sitting down to write.  The moments have been few and far between that I have had the motivation to write, and I can't say exactly why, but today I'm motivated, so I'm capitalizing on this moment.

A lot has changed since my last post.  A lot has been learned, and a lot has been lost.  Our family is transitioning into being healthier, both physically and mentally, and more independent.  Everyone in their own ways, has grown so much in the past several months, and I can honestly say that I don't even feel like the same person I was the last time I sat down at this computer to blurt out what was on my mind.

Life has been throwing curve ball after curve ball, and I think I've just found my glove.  It doesn't quite fit perfectly, but I'm breaking it in.

My kids are amazing.  I have begun watching all three of them begin to interact, mostly in part due to age, but also because they have become so aware of each other.  Little Dolly is so sweet to Nicholas, and asks him questions the same way Mom and Dad do (by giving him a choice of two answers) and will let me know how he answered her.  It is absolutely precious and I love watching him reach out to touch one of her hands when he answers her.  They may not play together like some siblings do, but they are at least AWARE of each other, and this is progress.  She will also be starting pre-school in the fall, and while the idea of her being at this age already startles me, she is very ready, and I know she will love it.

BrodyMonster has become increasingly independent, and he and Little Dolly play so nicely (who am I kidding....he pulls her hair every 15 minutes, and she cries and hits him back....) and regardless of the outcome of their play, it is a new experience for me to see my children in this light. I love every second of it, and I can honestly say that I have burst into tears at times watching them "play pretend" or make new friends at the park.  This is something that I cherish more than most parents might, or maybe not, but I can't even describe the how wonderful and happy this makes me feel.

As for Nicholas, we have many changes happening.  He has been doing great at his school, and progress, albeit slow and steady, has been made.  It's not always tangible, but the little things, like how he is starting to listen and do small things that I ask him to do (like "Come sit on the snuggle couch with mommy, Nicholas!" ) is beginning to give me hope that we will one day connect on a much more intimate level.  He is so loving, and is amazingly gifted with vocabulary and reading.  I have been quizzing him, and I am always shocked at the knowledge that he holds in his little head.  On a not so wonderful note, his pediatrician has advised us to see a geneticist once again to have him tested, and hopefully rule out any "syndromes" that may be causing his delay in physical growth. This one threw me for a loop and hit me pretty hard, but forward we march.  On a more positive note, I have been toying around with a Casein Free diet to see if there are any changes to his behaviors or physical symptoms.  It has only been two weeks, and nothing majorly notable, but he DOES seem to be trying to communicate more effectively.  I did not begin this for that reason, but more for a "what the heck....lets see what happens...can't hurt, right?" kind of thing.  Not to mention, his diet has been awful for so long, that I have to believe that his growth issues are related more to this than a syndrome (fingers crossed) and I figure this way I can try and get better nutrients in him. He's been doing really well with it, and we will forge ahead regardless of what we find out.

As for the practical stuff, our transition back to our home school district has begun.  He will be back "home" in the fall, and while I have very mixed feelings about this, I am doing what I can to ease any anxiety I have about it.  We have begun occupational therapy again, will be beginning speech again this week, and also are starting a new home therapy program beginning this week.  I am ecstatic about the home therapy program, as it is focused on not only Nicholas, but his siblings as well. The idea is to show them a system to communicate more effectively, and to have them use this system themselves while also modeling it for Nicholas so he has that extra reinforcement.   The program itself is a work in progress, and basically a concept that I've not seen implemented anywhere else.  The fit of our therapist will be great, because she already knows all three of my children from another program we are in, and her energy and excitement to finally implement her idea with an actual family is contagious.

As for ME, well, I'm still alive and kicking.  Kicking and screaming sometimes, but more now than ever, starting to figure out how to let go.  Life has been rocky over the past several months, and at times, I have felt like I was drowning in the middle of the ocean.  But today, I feel good.  I can see the shore.  I have a lot of swimming to do, but I'll get there.

So with that, rather than detail a boring account of our past several months, I would like to simply share some nuggets that I have learned from our ever-progressive journey:

1) Put your own oxygen mask on first when the plane is going down!  It's true what they say, and I can't agree more.  How can I help my family when, I myself, am struggling to breathe?  It's a learning curve, but it's slowly happening.

2) You can't control everything in the world, but you can control your own reactions to it.  This is a big one for me.  Letting go of some things that you simply can't control just makes life  much easier to manage. This applies to just about every situation I encounter, and I'm really trying to practice this more. It brings me peace, and it allows me to give more of myself  since I am not focusing on everything I CAN'T do.

3) Create your own atmosphere.  I have been listening to a lot of music lately.(Hence the title...The Long and Winding Road....which I happen to be listening to now.) As simple as that sounds, I find that the right music can influence my mood and switch a bad one to a good one like a light switch.  Try it!

4) Taking care of yourself is not being selfish, it is your responsibility.  I fail to do this often, and now know more than ever, that it has to be a priority...and it is.

5) You can't take the future for granted, or assume you know what it holds.  Many unexpected events will happen, and you can't plan for every single one of them.  Just embrace this day, and this day only, and the rest will fall into place as it should. Sometimes its just best to stop and smell the roses, as they say.


That's all for now. As I re-read this, it just sounds like a bunch of cliches....but then again, cliches are cliches for a reason! :-)

Until next time.....

The Nickel Pickle 2014: Here's Our Story

Well, it has been ages since I have written, and what better time to start again than during April...Autism Awareness month?  Many of you who read my blog already know that we are hosting a fundraising event in September to help fund therapy and educational and growth opportunities for our Nickel Pickle. We are hosting a 5&10K run/walk at Hines Park, and the website for registration is now live.  I have been overwhelmed by the excitement for participation by our friends and family, and also by the generosity of our many sponsors out there.   Since the link to my blog has been posted on our registration website, and likely many participants and sponsors who do not know us well will be clicking the link,  I wanted to share a bit about about our journey, and what exactly they are supporting if participating in this race.  I had written this initially to share only on the registration website, but I have decided to share here since I also have acquired many blog followers in previous months of whom have not even seen a single recent post from me.  With that, I figured this would be a good "re-introduction" to our family, and a brief summary of what the purpose of this race is.   If you are a new reader, thank you for following!  If you are a race participant or sponsor, thank you from the bottom of our hearts for your support!  And here is our story....

Six years ago, our family was only just beginning, and was largely clueless about topics such as Cerebral Palsy and Autism. Why would we know in detail of such things?   These were conditions that affected other people...people for whom we had compassion, but to whom we  never dreamed we would ever really understand or relate.   We were so very unprepared and naive for the enormous punch in the gut that we would receive after we were blessed with our first little baby boy.

Nicholas William, a seemingly healthy, and well over nine pound  full-term beautiful baby boy,  was born in the fall of 2008. Despite a healthy pregnancy, and a  normal delivery via c-section, the feeding and muscle tone issues we began to recognize  in him were almost immediate.  However,  months later, these issues were  still donned by the “experts”  as “not a reason for major concern.”  At only 3 months of age, we were completely unprepared for what path these minor signs were slowly pointing ALL of our lives towards...

By the Spring of 2009, my intuition was nagging at me that something was just not okay.   It was more than minor, yet global “developmental delays” (a phrase I would become all too familiar with.) At the age of 6 months, Nicholas  still wasn’t able to hold a bottle on his own, let alone transition to a cup.   He was incapable of  sitting up in a chair without significant support, and  he wasn’t  able to crawl around on the floor like most babies in this age group were able, and expected to by most standards. Despite my concerns, over and over by friends, family, and doctors alike, I was urged not to worry. I was simply being overprotective and inexperienced since he was our first child.  After all, “all kids develop at their own pace,”  we were told repeatedly by so many.  We were assured that he was a perfectly healthy, albeit slightly behind, little guy who would be just fine!!!   And trust me when I say, I wanted to believe this more than any person on earth, but I simply didn’t.  As a result of the constant reassurances, Nicholas’ dad  was in denial of the potential that something was wrong. After all, who WANTS to see an issue when all of the experts agree that there  isn’t one.   And despite my suspicions, he insisted, like others, that “He is FINE! You are overreacting!”  Dialogue between us on this topic all but ceased because the idea of entertaining it was simply too frightening, and too difficult.   

However, after months of  researching, heartache, and continued disappointment over  missed milestones, Nicholas’ pediatrician  eventually provided the unfortunate validation of my concerns, that had, over time, also become Chris’ concerns.  He advised us to see a neurologist for an MRI and any other recommended  testing, as well as  to contact the local school districts’ special education program to evaluate our son in the event that he might (and likely would, they advised)  qualify for services. Services?  We didn’t even know what this meant!   Our family was mentally not prepared for what this recommendation  even was implying at that time, but still pursued every bit of advice that was accessible to us,  inherently understanding the gravity of the situation.

Shortly after his 1st birthday, we  were introduced to a whole new version of parenting. We were given the diagnosis, in quite an abrupt manner, that our son   “has Hypotonic Cerebral Palsy.”     This is a shock you cannot prepare for.   The numbness you experience in the moment when  a doctor gives your child a diagnosis that will forever change your idea of who you envisioned him to be into a person you had never imagined  he could ever be is simply unexplainable.  The pain associated with it cannot adequately be put into words.    At the young age of one, and with a vague diagnosis such as this, doctors aren’t able, and frankly aren’t willing  to predict what the future holds for your child.  In that moment, all of your fears and worries surface as if all at the same time, and you yearn desperately  for the answers that no one can ever give you. EVER.   Would he ever say Momma or Dadda?  Would he ever stand up and take those first few precious steps on his own? Or even more basically,  would he ever be able to perform the  simplest self-care tasks, such as feed and dress himself, or go to the bathroom without assistance? These are developmental milestones that most parents  take for granted when they watch their child develop, and in that very instant, the certainty of the achievement of these very basic skills was all but ripped from our grasp.  It was heart wrenching, frustrating, anger-provoking, and so deflating all at the same time.    Everything you have ever  imagined doing with your new child as they  grow older is shattered like a crystal glass on the floor  in that one single moment.    Instead, you are left with heartache and and a vast head full of vacancy and  question marks.  No one has real answers. In the coming days, weeks, months and years, we began  to learn a whole new vocabulary and parenting activities which included  occupational therapy, physical therapy and speech therapy,  along with the enormous slews of new acronyms.

And there it was….therein began our  new journey….specialists, tests, waiting rooms, physical therapy, occupational therapy, speech therapy, tears, fears, isolation, and sheer mental exhaustion. While most kids at this age were  at  play dates or doing fun activities  at home or daycare,  Nicholas was, almost daily,  in a therapy of some sort working on mastering simple basic life skills.   All the while, though some progress was being made, once again I had a nagging suspicion that “hypotonic cerebral palsy” just didn’t completely add up….or at least wasn’t all there was to Nicholas’ complexities.    And the research ensued, once again…..

Fast forward to 2012.  We sought out help for an autism evaluation, which at the time,  cost in excess of $2000 and was not covered by insurance.  We were referred to a research study through a local hospital, that would provide this evaluation a no cost if we would agree to participate in the study for at least 6 months. We jumped at this opportunity, wanting to ensure that we had a complete and proper diagnosis in order to provide the correct therapies for him.  

After evaluating Mr. Nickel Pickle, our suspicion of his Autism diagnosis was confirmed.   We were, this time, informed that our son has a lifelong disorder that is treatable, but not curable, and results in very unpredictable outcomes depending on the individual and the interventions used for treatment.  We were not entirely surprised, and while this news was still difficult for us to digest, by this point, we were well out of denial, and well aware that our son was going to need an enormous amount of help no matter what  the diagnosis was called.  

The biggest change we made upon learning of son’s autism was the addition of ABA (applied behavioral analysis) therapy to his “diet.”  And the fastest thing we learned was that unlike with many other childhood diagnoses, while many types of treatments, therapies and interventions  are available, many and most are not covered by insurance companies.  ABA is  the only experimentally verified therapy that has shown positive results for many kids with Autism, and therefore  our obvious first step.  However, we were frustrated to learn that the cost was nearly $1000/week for this type of intensive therapy, and at that time, was not covered under any insurance policies.  Despite this, we forged ahead and put him in a program.  The result was the beginning of our window into his potential, and never for a minute will we regret this decision, despite the enormous debt that we incurred as a result. That said, this is not the only therapy that  he, or many other children on the spectrum  could benefit from, and likewise is also not always beneficial for every child with autism.  Herein lies the financial dilemma of having a child with this specific disability, or as I like to think of it, having a child who is “differently-abled.”  

Many interventions  are available that might better suit a specific child with autism to help maximize his or her potential, but most often, they are not covered by traditional insurance, and there are no guarantees that a particular child will benefit from them.  After all, since we are still uncertain about the causes of autism, the treatments  are all still very anecdotal and individual. Some things work for some individuals, but not for others.     Hippotherapy (therapy using horses), PLAY PROJECT ™ therapy, feeding therapies (not required for all autistic children,) craniosacral therapies,  DAN Doctors,  service dogs,  and various other  programs are just a handful of “available” interventions,  and all claim some success for many children, but are all  extremely expensive.  As a parent, you are forced to make a decision on how to maximize your child’s potential  and address their greatest developmental needs based not on what you really believe may help him, but on your financial ability to pay.  It is a heartbreaking choice, and one that we have made over and over again.  

The cost of providing care for a person with autism in the U.S. is an estimated $1.4 million over the span of  their lifetime, according to a study funded by advocacy group Autism Speaks, and for those lower -functioning individuals, the cost is even higher.  In our personal experience, we are still struggling to receive reimbursement for ABA therapies that, by law should have been covered when the law changed over two years ago.  This, we know, is only the beginning of our financial struggles. 

We are fortunate to have wonderful friends and family who have helped us along the way thus far, but are still also now facing this dire situation. Rather than crumble, we decided to seek another approach.  Autism affects not only Nicholas' future, but the future of our other two children.  We simply cannot and will not give up on any of them.  We are humbly asking to enlist your help by joining us in this fundraising event intended to increase access to greatly needed resources for our son. The funds raised will faithfully be put towards therapies, treatments, and educational opportunities that will allow him to maximize his potential, which we believe to be very great! We have a long road ahead of us, and as the years pass, the needs and complexities of his diagnosis will change, and will continue to affect our family in so many ways.  As parents, we will stop at nothing to pursue his ability to live independently one day, and enjoy the best life that he can while still providing our other children with what they also deserve….a bright future! We hope to begin this annual event in order to make this happen for him, our family, and potentially, for other families as well! Please join us in what we hope to be an annual event to benefit Nicholas, and eventually, a way that we can give back to other families who also desperately need help for their children on the spectrum.  Thank you sincerely for your participation!  Until all the pieces fit...

 

Crystal Ball

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

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

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

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


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

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

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

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

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


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

My Summer Vacation

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

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

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

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

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

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

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

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

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

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

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

Until next time.....

The Saga Ends, A New Chapter Begins

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

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

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

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

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

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

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

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