Tuesday, January 19, 2016

A Shot in the Dark

Over the past year, I have not spent much time blogging.  As I noted in the last post, I am going to attempt to do a better job of this starting now....not just for arbitrary reasons, but also because we are on the cusp of some new treatments, and I would like to keep a current record of the trials, tribulations, and hopefully also the progress that results.

To recap, because of the Nickle Pickle 5&10K fundraising race that we started a couple of years ago, we were finally able to pursue a path of treatment that I have long since been interested. (Thank you to all who have been a part of this for the past couple of years....I owe a completely separate post to this topic!!)

 As most people  (in the autism community, anyway) know, Applied Behavior Analysis (ABA) Therapy is the only "evidence based" treatment that is successful for autism.  This means, basically, that this is the only scientifically "tested" treatment (using discrete trials and other fancy scientific methodology) that has gleaned positive results with a large enough population, and with repeated similar positive results that it can be deemed "evidence based" and successful for treating autism.  Scientists across the country would probably cringe at my not exactly scientific description there of what this means, but that's basically the layman's way of understanding it. As a result, legislation in most states (and most recently in Michigan about 3 years ago) passed laws requiring that insurance companies cover this specific treatment for kids up to age 7 who have an autism diagnosis.

At that time, we were new to the autism diagnosis.... and VERY new to this world of Autism.  We immediately signed up, and got started at one of the most reputable places in the country (luckily for us, it is only a few miles down the road.)  This brought us some sense of hope that we were going to "fix" our son, and "ABA therapy" him into normalcy (so was our thinking at the time.)  There are all kinds of stories, documentaries, books, etc out there on kids who have a diagnosis, and then engage in an intensive ABA therapy program, and seemingly "magically" are normalized into what appears to be the skin of a typically developing child.  At least, at the time, this is what I kept seeing and reading about it.  What I later realized, is that when you are dealing with a disorder that has no proven origin, subjective diagnostic methods (in my opinion anyway, though technically, it is done using medically relevant psychological testing) , and no magic medication to cure said disorder, that just about EVERY method of treatment in existence is also sprinkled with success stories such as this....evidence based or not.

This makes life very confusing and challenging for a parent who wants to help their child maximize their potential.  There is only ONE evidence based treatment (ABA) but it doesn't work for everyone, and when it does, the results are extraordinarily varying from person to person due to the extreme spectrum of the disorder.  That said, it seemed a logical place to start, and while we made some useful and exciting discoveries about out son's abilities and cognitive understanding in the process of participating in ABA, it did not carry over for him into other environments.   Perhaps it would have had we continued, but after driving ourselves into severe debt due to insurance companies not covering the therapy as promised, and adding another child into the family in that same window of time, we were forced to stop.  Life sometimes presents some cruddy choices to make, and this was just one of them we had to make for the good of our entire family.

As time progressed, and my knowledge of possible ways to help my son grew, I became increasingly interested in what is known as the "bio-medical" approach.  To me, a mere parent, while ABA might be the only evidence based treatment that has proven positive results, (say the traditional medical professionals,) it is not treating the root causes of Autism, which I came to eventually believe are very much related to the gut and the biological systems within the body that regulate and/or hinder some of the processes of the brain.  I'll admit, there was once a time when more "seasoned" Autism parents would talk about the "gut, " the biomedical approach, diet change, etc and their importance in this whole autism mystery, and I would mentally roll my eyes and think..."not again!"  But over time, and after more and more reading (discriminative and selective  reading, I would like to think)  I simply could not deny that there had to be SOME link between the nutritional deficiencies and biological factors that play into some of the behaviors/symptom associated with Autism.  Anecdotal or not, there is simply too much information out there, to completely deny this possibility, and this potential to help my child.  Evidence based? Perhaps not now.  But that doesn't mean that one day it won't be.  And wouldn't you do whatever you could to help your child? Especially if it can't hurt them???  And so,  this is how our journey on the bio-medical train began last year.

Now, as this is not an evidence based path of treatment, there are very few doctors who specialize in this, and fewer who accept any type of insurance coverage (for some of the medically based portions of the treatment, such as blood work, lab testing, and some medications.) It is extremely expensive, with no FDA approvals, and no guarantees of any kind.  Therine lies the hesitation for many (myself included) parents to begin on this path.  It's a big gamble, and if you don't have the funds to play with, and the guarantee of success, it can be hard to consider without being extremely skeptical.

 In our case, the caregiver we see is an actual Medical Doctor who, over time, saw the significance of this type of treatment, not only for autism, but for all KINDS of common disorders....Celiacs, Alzheimer's, GI issues in general, allergies, etc.    to be relevant enough that he left traditional medicine altogether to pursue this field exclusively.  The basic premise is to employ nutritional based regimens (supplements, and dietary changes mostly) to treat the causes of the discomforts or deficiencies that affect the biochemistry of the body and cause various arrayes of life-complicating issues.

At first,  learning about all of it seemed a bit like hocus-pocus and hype.  But, even for the skeptic (aka ME) when you have a medical doctor explaining to you (and also your own pretty solid physiology background from college) the reasons why and how these deficiencies can affect a developing brain  make it pretty hard not to at least acknowledge that it makes a LOT of sense.  If you want to learn more about it, this is their philosophy and the basic foundation of the approach.

Anyway, all of this to say that last year, we began a regimen of daily supplements as well as a dairy and gluten free diet. (Well, when I say we, I mean Nicholas...but it certainly takes a village to keep it up!)  I did see some positives, but we had some issue with reconnecting with the doctor (who has since left the practice) and we ended up falling off of the wagon after several months.  However, we are back on board, with a nationally renowned bio-medical doctor, and have begun basically the same regimen, PLUS a major addition to our arsenal: Methyl B-12 Shots.   This deserves a post of its own also, and it goes without saying that giving my son a shot every 3 days took some serious consideration, and is something we do not take lightly.  However, this treatment for autism, to date, is one of the most potentially powerful (anecdotally anyway) supplements for him, and we decided that we simply have to try and see if it helps him.  Herein lies the quandary that so many autism parents find themselves in....if at first you don't succeed, try, try more things......

SO, this is where we are.  After just a few shots administered thus far, I'm not sure if he's even getting the medication because we are still learning how to work our way around this needle thing ourselves. The first time we did it, I think I got more of it on Chris' shirt that in Nicholas' rear, and the last time, I'm pretty sure we just sprayed it all over his bum.  It's a challenge for all of us, though Nicholas doesn't seem to really mind other than not really being thrilled to be restrained if for even 5 seconds. All that we can hope is that the benefits outweigh the negatives. Only time will tell.  Regardless, I figured I'd share our experiences here for those who have considered this route, or have done it and had success or not.  And if you are one of those people, I'd love to hear YOUR experiences!

So wish us luck, and I will keep you posted on the changes we see, hoped to see and didn't, or didn't know we'd see that surprised us!

Until next time.....

Thursday, December 31, 2015

A New Year, and A New Post

It's the last day of the year.  I haven't blogged for the majority of it.  The reasons are multiple, and really less important than interesting, so I won't bother to elaborate. It has been a year of struggle, a year of self-enlightenment and reflection, and in the end (quite literally) a year of triumph and blessings for our family.  We all have grown physically and emotionally together this year, and I want 2016 to continue to be a year of growth and emotional maturity for my family.  I don't believe in making New Years "Resolutions,"  but this year, I'd like to simply make a list of the things I wish to aspire for in 2016.  Resolutions, I feel, set one up for failure, and thus I don't like to begin my year on that note.  However, my new motto is "Progress, not Perfection," and with that in mind, I would like to share my aspirations  for this coming year.

1) Be True to Myself:  honor when I need complete solitude, or the company of a close friend or friends.  I can only be a better mother and wife when I listen to, and grant myself what I need in order to refresh and recharge. It is not selfish, it is necessary and important.

2)  Find myself again:  Who am I after having had this roller coaster of a ride for the past 7 years?  Motherhood, and the unique challenges that we have had as a family, has redefined me.  In many ways, this has been positive, but it has also morphed me into someone I no longer recognize.  This year, I hope to reacquaint myself with.....well... myself. Sometimes I think back to when just blasting my favorite music while I spent time being productive in my home, or relaxed and watched the movies or television program that I really enjoy when I had the opportunity (not the ones that everyone else wants to watch) could do a world of good in turning my mood around.    And sometimes, I'd spend time in places that maybe my husband or children don't fully appreciate the same way I do (a scenic park bench by the water, or sitting quietly in a coffee shop reading a book) that would help me to re-center or just take a breath and enjoy some serenity.   I need to remind myself of these things and places, and find them again for myself.  Change is good, but completely losing myself in the process of change is not a requirement. Frankly, I miss ME!

3) Be healthy:  This is a goal I have every year, but usually it pertains strictly to weight loss, and the fact that I "usually"  have this goal means that I have not yet achieved it.  This year, I will be striving for more of a holistic approach to health. By this, I do not mean acia berries and essential oils (though I'm open to this!)  but instead striving for a balance of mind and body health.  This past year has sent me well on my way to finding my inner peace, and this year, I hope to reach a place of mental and physical contentment.  Life, in any capacity, will never be exactly what we want it to be, but the way we respond to it is the only recourse we have. I will continue to find ways to take it in stride, even the parts that, in the past, have nearly suffocated me with sadness, hurt, anger, embarrassment, or depression.

4)  Yell less, love more:  In the chaos that is my life, with three children who are in the throes of emotional development (and frustration!) I want to make this world less of a struggle for them, while still fostering their independence and growth.  As parents, we always want and strive to do the best we can for our kids.  But that doesn't mean that we don't make mistakes along the way.  My kids are young, and I've already made plenty I'm sure.  This year, I will do my best to find better ways to deal with the parental challenges that push my patience to its limits.  Patience is a tough one for me, but being aware that it is not my strong suit can only help me to improve and be aware when it plays a role in my parenting approach. My kids are my world, and I always want them to feel and know this!

5) Unplug my family:  Like many families today, mine has been infiltrated and inundated with technology.  Heck, I'm the first to admit that I'm a junkie!  I love technology, gadgets, social media (well, not as much lately) and new toys.   But I feel that I am still able to separate the times when it is appropriate, and the times when it is not.  My children, on the other hand, cannot be expected to know this unless examples are set.  My hope for 2016 is to unplug my entire family during these crucial times when we should be interacting as a family.....not zoning out to you tube videos, games, or the television.  My heart sinks every time I look around the room and see everyone's face buried in a device or the TV, and now it is time to take action.

6)  Blog more!!! Yes, maybe this will be the year I get back on track.  I have been less than inspired or inclined to share my life with the world in the past couple of years.  I struggle with whether or not one day I will regret sharing so much of my life with people I don't even know (and frankly, more so with those who I DO know.)  But each time I read a post from a fellow blogger that hits home for me, and I feel that overwhelming appreciation for their honesty and openness in that moment, I begin to realize that I've had this same type of feedback from readers,  and should do all that I can to pay it forward in this one way that I can...through my own writing.  It's not to say that I am some kind of Autism or blogging guru....I don't hope to heal the world by any means.  But if just one person reads a post, can relate and benefit, then it has been worth my efforts.

I would like to wish a Happy New Year to my faithful readers, my new readers, and to those who have supported me in this endeavor in any way.  I hope that this year brings all things good, and I thank you for taking the time to hear what I have to say, even when it isn't really all that insightful or exciting!  I'd love to hear what some of your resolutions, aspirations, hopes and dreams are for YOUR year!  Feel free to share in the comments!  Until next time.....

Wednesday, February 18, 2015

Thank You For this Opportunity, Autism

I couldn't sleep last night.  I spent a better part of my morning investigating (again) what government services we may be (or most likely, in my experiences, are not) eligible for with regards to my son's autism and cerebral palsy diagnosis.   I go in spurts with this kind of thing.  It's either "balls to the wall"(where did that expression originate??) investigation on a topic, whether it be therapies, services, IEP verbiage, or whatever the flavor of the month is.  And eventually, I become so drained, drowned, and jaded that once I accomplish what I set out to do (or fail miserably), this quest for knowledge and help goes on the back burner for as long as I can get away with it.  It's a new pattern that has developed since we've joined the "Special Needs Club," and I'm  pretty certain I'm not the only one who operates this way, because it can be exhausting, frustrating, and down right maddening.

Let me explain how a typical cycle goes. About a year ago, I was told by many well-meaning health care professionals, and random people about the plethora of much needed "resources" that are allegedly available to my family because of the special needs status of my son. (and the quote, unquote is very intentional in this case.) Some of these include, but are not limited to, financial supplements, free therapy, respite care (this is a BIG one), medical coverage, and even programs for his siblings.  Sounds hopeful, right? Thus, I began the process of calling the major Community Living Services organizations to investigate which, if any, of these would apply to my family's situation. And let me insert here that I am NOT one of these people who feel ENTITLED to help simply because I have a son with special challenges.  Quite the opposite, in fact.  I seriously wish that I did not have a REASON to seek out these services in the first place.  However, with the advent of our diagnosis, along with the birth of my other two children, our financial situation has essentially gone from living a comfortable lifestyle, to one in which I have to wait to do the grocery shopping until pay day (and even then knowing I am shorting SOME medical provider, or skipping a utility payment in order to do so), and choose which bills I will and will not pay this month based on what we can manage in that given month.  I say this not to elicit any type of sympathy, but to paint a real picture of what happens to MANY hard working families who, like us, and much like participating in one of those  polar bear plunge events,   are SHOCKED with the expense and rate at which you must spend money in the early years of your child's life with the hopes and intentions of maximizing his potential and at the constant direction of every medical professional you meet.

But I digress..... With each phone call that was made today in the efforts to reap the benefits of said organizations, I  became increasingly more disappointed and hopeless.  I was either  shut down and referred immediately to another organization, flat out told that the program didn't apply to my family for one reason or another (and 99% of the time it was because it was income based, and does not consider any debts or other expenses related to our diagnosis)  or that the program that I was seeking information about (that perhaps another parent had informed me of because they were able to secure this service at some point,) was no longer in existence because the funds had been depleted or completely cut off.   Awesome.  The result was that I have learned an immense amount about what is out there, but what is clearly nowhere within our reach.

Anyway, I started this post about 2 weeks ago, and in that time after sitting through 5 hours of interviews, taking Nicholas out of school for two full days (so that the interviewees could verify that in fact, he does not talk, and needs a substantial amount of assistance with his daily living tasks) as well as making multiple and hours worth of phone calls to various organizations to complete all kinds of applications, I am here again at square 1. DENIED. DENIED. DENIED.

While I am not seeking a pity party here (PLEASE, no pity...we are not the only ones in this boat, and also there are many other circumstances that elicit this type of pursuance of help), I feel that this is an important part of our life to share with those who truly want some insight into what it is like to parent a special needs child....ANY special needs child. On top of the general care and dealing with the constant daily needs and nature of the diagnosis of the child, it is it's own full time job simply to advocate for them, whether it be at school, financially, or otherwise.  And trust me, with three young children, it's not a job I prefer to spend my time on when there are little people who need and DESERVE my attention.

That said, here is the plus side.  This inspires me, and pushes me beyond my comfort zone.  In a sick and twisted way, I am thankful for the experience because it has lit a fire under my arse, and has pushed me to challenge myself. It is forcing me to be resourceful, more efficient, more cost effective, and even "scrappy" if you will. As a direct result of these wasted countless hours of my time seeking help, it has forced me to realize that I will have to figure out my own way to make this work for my family.   In fact, I'm writing my first real grown up business plan to create a company that, with any luck and success, will help to support my family financially, while also benefiting other special needs families.  This course of action would have never even occurred to me  3 years ago, before we were faced with these challenges.

 There is an incredible need for middle income families with special needs children to receive financial help and support, and  the government simply cannot provide for these families. And I suppose in my heart of hearts, I get this, despite my wasted time and frustration.   But that  doesn't mean we can't support each other, and that has become my new mission.

Thus, I thank you Autism, for inspiring me, and giving me not only purpose, but courage.  This too shall pass, and better things are to come.  It's all about perspective, and I choose this to, instead of break me, become my new opportunity.

Wednesday, November 26, 2014

I Love Me Some PECS!!!!

(OK, Just kidding...not that kind...but it lured you in  to read this right????)

For a few weeks now, Nicholas' teacher and I have been communicating and collaborating to get a pecs system fully implemented in my home. Backing up, and to protect the innocent, I should not mention her name, but will suffice to say that this amazing and lovely woman has made in astounding impact on my son at school, and she doesn't want to stop there.   She has spent her own precious time, both in and out of the classroom, to help pull together photos, laminate cards, and make visual schedules and a binder full of picture options for mom and dad for not only Nicholas, but for my other two kids as well.  She came to my home yesterday, and physically set up the entire system, and ran me through some drills on how to "train" the kids to respond to the schedules. (Not necessary for Nicholas since he already uses this system in the classroom...he just ran with it immediately.)  

This morning, I was feeling particularly empowered, after only 1 hour of use.  Some amazing things occurred far beyond my expectations, and I suddenly fell in love with this system.  And by the way, this is not just useful for Autism parents....frankly, it may be even MORE useful to me with my other kids, than with Nicholas. (or at LEAST equally useful.)  Anyway, here are a couple of nuggets that I took away from our first morning of using this system with all of my kiddos.
1) My youngest, who can be quite emotional and defiant when he wants to be, was not only cooperative, but was EXCITED to do the tasks on his schedule (go to the bathroom, get dressed, and eat breakfast) which typically each require 1000000% of my undivided attention in order to complete successfully and without tears.

2)  With each of the kids following their schedules, it allowed me time to prepare their breakfast and give Nicholas some extra help where needed which NORMALLY is a chaotic situation where two kids are yelling at me to produce Milk and Waffles at the speed of light while Nicholas bangs his head against the wall in the dining room while impatiently awaiting the oatmeal that I am very distractedly trying to prepare.

3)  This one is probably the BEST, and the most UNEXPECTED of them all:  They all cooperatively sat together at the small table I use for them in the dining room.  As a result, they even paid a little bit of attention to each other.  Avery told me that Nicholas smiled at her when she repeated something from a show she likes, and she was genuinely happy that this happened....and so was I.  Later, she told me he wanted more milk, and I wondered why she had said that, and discovered it was because she took it upon herself to use the "Yes/No" card to ask him if he wanted more.  WOW!  I didn't see THAT coming!  

So, for today, this is what I wanted to share.  And since it is almost Thanksgiving, this is also what I am extremely grateful for!

I plan to write a mini-series complete with videos and photos to document our PECS progress in our house.   Oh, and for those who don't know what the heck I'm talking about when I say PECS, it is definitely a far cry from the photo above....but I just couldn't help myself when I came across that photo when googling images for the PECS system. :)

 It stands for Picture Exchange Communication system, and looks something like this, but has many variations and function:s
At any rate, I'll save the details for another post, but was super excited about this being in our home now and just had to share!!  So simple, yet SO very effective!  

Hoping you all have a lovely holiday, and thanks, as always, for taking the time to read.  Until next time....

Tuesday, November 4, 2014

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...

Saturday, October 25, 2014

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....

Wednesday, May 7, 2014

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.....