The Sound of Quality Time

Looking at the bell here, at Montgomery Area Nontraditional Equestrians (MANE), got me thinking about the idea of the bells of time, signaling listeners to hear their calling.  Its what got me thinking about the idea of time and how we choose to spend it, with whom we choose to spend this precious time, and what quality time involves and means to a special needs family like ours.

A creative approach to life's daily in's and out's makes it a more bearable and interesting reality.  My creative approach stems from a musical background.  You see, certain musical theories have been ingrained into my mind over the years.  Since music is a language, like other languages, it encompasses structure, nuances, a rhythmic flow and meaning.  Whether or not I am actively engaged in my craft, it will always be integral to my overall outlook and experience.  

Music is the language that I fall back on.  It is the sounding board that I default to, when I look for quality in whatever my focus may be.  I don't have to actively be engaged in the music making process in order to feel the benefits of its effects.  Through years of study and making music, its lingering existence continues to spread its wings and hover over my life long-term; as if these wings cocoon me in a protective shield.  For instance, I'll catch myself walking around hearing music in my head as well as wake up in the middle of the night from a dream where I am composing or playing music.  

 
“Get your studies out of the way while you’re still young,” my father used to say, in an urgent tone.  That seems like years ago, and yet, the past twenty years have come and gone.  I am glad that I followed his wise words, because it was a challenge to complete my studies, just being a single person, living away from home.  I had always been very family minded, and the daily absence of my family during my college years was not an easy thing.  In fact, I often felt that there was a hole in my heart.  That missing piece of a future family of my own would eventually fill that void.

I don’t know how my parents did it – getting their advanced degrees while working full time and raising us three kids.  Perhaps it was their creative approach that cocooned us as youngsters from their coexisting reality of study, work and parenthood.  Pursuing it without dependents was hard enough for me.  

On a beautiful sunny day at MANE

My upbringing, in this sense, had directly influenced me.  I am glad that I completed my studies before getting married and having children, even if the process took me into my thirties.  I was able to close that chapter in my life and focus on the following pages in the next chapter.  I had no idea, as a student, what type of challenges lay ahead for me.  I am now able to devote most of my time and energy to our kids.  I don't feel like I am missing out on something as substantial as an education, and I don't have to worry about returning to my studies at some later point.

At the time, getting my doctorate was the most important thing for me.  With it, that phase presented its own trying challenges.  It is interesting though, that just a few short years later, my priorities had taken a drastically different turn.  As driven and as motivated as I was to pursue my life's passion, things quickly took an unexpected direction, and another new passion had evolved in my life.   

From the start, after Jake was born, my focus was on raising and nurturing this beautiful child; he had my heart from the very beginning.  The first couple of years were as typical as to be expected of these early years.  We were very happy first time parents and we took Jake everywhere with us.  Perhaps that is why he usually does pretty well with flights and trips.  Jake's development seemed to be meeting all of his developmental milestones.  However, during Alex's deployment in 2008, I started observing some signs that pointed to (what I didn't yet know) autism.  By the age of two and a half (he is now seven) he was diagnosed with autism shortly after our twins were born.  

I continued to be active in music since Jake came into our lives, but music quickly took a back seat to the demands of motherhood, special needs and a military lifestyle.  I put all of my energy into our three kids, and as I share in my second post: 1, 2, 3 and Nobody's Talking,  http://lilybrose1948.blogspot.com/2012/10/1-2-3-and-nobodys-talking.html , there were speech delay issues with the twins as well for a few years.  By the time that the twins were fifteen months old they were both in speech therapy every week, so between all of the kids' therapies and my part time music work, I was running around from place to place feeling like I was treading water much of the time.    

The thing that got me through it was the love that I had in my heart for each one of the kids.   I made a point of enjoying something about them every single day.   It didn't have to be anything big, it could just be a look, a smile, a laugh, or an interaction.  I love the relationship that I have with my mother, and I always wanted to have the same type of close relationship with my own kids.  I remember telling her that once and she said that it starts from the mother, and how a mother interacts with her kids from early on in life.

As life passions go, I had noticed that if I was not involved in something creative, that my spirit would suffer greatly.   It felt like part of me was starting to die, like leaves drying up on a plant, much too soon.  I would go in waves of creativity when I found the energy for it, or when I needed an escape from reality, but most of the time, I was running on fumes.  In the back of my head I always thought that this was the time to be devoted to the kids, and these were incredibly precious years that we would never get back.     

The twins playing in a toy house

Jake at an occupational therapy session 2014

Alex and I became very passionate about autism advocacy and special needs, as we lived and learned about this new world; experiencing autism first hand at home.  Teaching music at a university level took a back seat to quality time with my family.  Jake's diagnosis caused me to refocus my attentions.  It was my turn to provide that cocooning shelter for my fledgling family.  We didn't really know what we were doing back then, as first time parents dealing with special needs.  Everything was all of a sudden new for us, but we tried to make the best of a very unique situation.  We headed into it as a team, preparing to embrace this next chapter with open arms.

As we have learned along the way, through the daily ups and downs, quality time for ourselves is a precious gift.  This holds true with giving a similar gift to each of the kids as well.  With Jake, it is only natural to want to give him lots of special time.  He also needs quiet time with one of us parents, away from his siblings.  When his senses get overloaded he needs to remove himself from the family room and recollect himself.  It's easy to let Jake be the main focus for us, especially since living with and learning about autism is an on-going journey. Therefore, it is equally important to give the twins quality time of their own.  This way, they feel as meaningful and special, and not jealous of their older brother.  I write a lot about needing and achieving different types of balance in our lives.  This is one such scenario, where we wouldn't want there to be a sibling imbalance.  

As for the quantity of time that I had spent on my musical studies, and how that time affects my life today, I pace myself in shorter spurts of creativity and music making. These days, those shorter spurts go further.  The times when I teach, practice or dabble in artistic projects, hold a deeper meaning for me today, because they are framed by a different context.  It is not a context of learning anymore (although we constantly grow and evolve at every stage in our life) , but rather, it is a wider scope that embraces a new type of quality; a new time signature.  

I think more about maximizing little spurts of time and making the most out of that quality of time.  I refer to it as "smart practice" with my piano students as far as maximizing their own time at the instrument.  There are moments of action, and there are moments of reflection.  There are moments of expression, and there are moments of introspection and repose.   Each of these types of moments are like seasons in our lives that have their own purpose and timing, and are therefore equally meaningful and worthy of experiencing.  So even when we are not the most productive or thrilled with ourselves and our productivity, but where we may be in a moment of reflection or a moment of repose and rest, we are still doing what we need to be doing in that moment in time.  

Overlooking a serene pond at MANE at Jake's equine therapy

Looking back, I realize that music never stopped playing in my head along my personal journey.  My life-long friend had always been there with me, even when I wasn't aware so much of its presence.  It was still there with me while I focused on other things like children and family.  It kept me company, knowing I would return to it whenever I could.  As the kids get older, I am able to find more time to get back to playing the piano, either to pull out some of my old favorite repertoire, or savoring learning new pieces again while getting reacquainted with some old loves of my life: Beethoven, Chopin, Rachmaninoff and Schumann, are amongst some of my favorites.  

The sonata I've recently begun practicing - Op. 81

I feel very fortunate to have been able to find part time university work in music, that enables me to have enough time with the kids.  I have managed to balance that sort of work with teaching private piano lessons as well as performing in a few musicals over the past few years.  Along with the hurdles and challenges of special needs, speech delays, military deployment and growing into my forties, this past decade has been incredibly enriching and rewarding on so many levels. 

So there it is - for me it takes a creative approach to life's daily in's and out's in order to make it a more bearable and interesting reality.  Just as in music, it takes knowing the rules very well, so that we can then get to break them.  It is in those moments where rules are broken, that true beauty and creativity takes place.  The key is to break up the normalcy; to step out of the expectation.  Similarly, with autism and special needs, it takes thinking outside the box type of mentality, or approach, in order to thrive and move forward.  It is all about connecting the dots in a slightly different way then usual.  That's where the magic happens!  Isn't that the same exact thing as creativity?  

If you had something that you were passionate about at some earlier point in your life, and haven't spend time with it lately, see if you can reconnect once again.  It is what has worked for me and has helped me along some of the most meaningful times (good and bad) in my life.  Reconnecting to our passions is what helps us find and achieve balance in our individual journeys.  It is the best sort of gift that we could give ourselves.  Consequently, our reality becomes what we choose to believe is our truth, and what we choose to surround ourselves with as our personal truth, what is so dear and precious to us - for me it is my family, people that I treasure, and creativity, hold the highest quality of all.   

I can hear the bells of time ringing now, 

calling us to find our passions once again;

it is the sound of quality time.

Moving Forward In The New Year

­Another year in our lives has come and gone.  It is a new month, a new week and another cold, but sunny, winter day.  One of the perks that I have come to cherish while living in the south is that I can almost always look forward to a sunny blue sky during this time of year.  Having recently visited the northwest, I found that I had really missed this element of the season. 

I sit here with my musical Soundscapes, the space heater hums away and my down-feathered slipper booties keep me warm and cozy.  I have tried to write recently, but I haven't been able to clear my mind and focus.  I have to be in a creative mode to write, compose, and to just create in general.  If I get in the right mood, things tend to reveal themselves.  The last half a year however, has been less about reflecting and more about action - putting thoughts and goals into motion.  It's hard to quiet your mind when you are in motion and your wheels are still spinning.  That's why I like to find a Zen place in my mind, so that creativity can begin to flow.  It is at these mind-freeing moments that I know that all of the rest will take care of itself.

Finding A Balance - Family Needs Versus Self Needs

Over the past few months I have been trying to find a state of balance in my life.  More specifically, I have been trying to find it in both larger and smaller scopes.  Doing so has enabled me to balance family life with time for myself.  This process started with an image; something that embodies the idea of what balance is for me.  I asked myself what I need and want, set some goals, came up with a realistic plan, and finally, I took action and followed through with that plan.  

The first image that came to my mind was a kaleidoscope.  When we look through a kaleidoscope, we see a vibrant image, but are drawn into the smaller details that produce that image.  The dual, large and small, shapes coexist and are therefore interconnected.  One cannot exist without the other.  Likewise, the family unit is that larger image.  What our role as parents is within our family unit, in contrast to who we are as individuals, affects and plays into the larger family dynamic.  The individual family members are the smaller (but important) details of what makes up the larger image of the family as a single entity.  All too often, we tend to put personal needs aside and focus on the larger image, and what's best for the family usually comes first.  If our individual needs are not met however, it means that the family unit can’t function at it's best.   

The imagery of the kaleidoscope reminded me of something else as well.  I had come across the terms macro and micro in a music theory class years ago, as being two distinct ways of looking at a composition. One way, is to look at the larger picture: the form, foundation, shape of the piece, the expression and how everything is held together structurally.  Then there are also the smaller details: the notes, rhythms, motives, themes and stylistic nuances.  What I didn't realize at the time was what a big role this concept would play in my personal journey and how it would shape my overall perception.   

Looking through the kaleidoscope while perceiving the micro/macro structure and details had made a lasting impression on me.  It is as if a seed had been planted into my mind, later sprouting branches and leaves that open up into that southern winter sky.  They seep in through the lacy intricacies of my life, as swiftly as a breeze blowing in through a soft lace-curtained window.  Consequently, it had become almost a theme, or a motive for me after starting a family.  Since both large structure and small details exist simultaneously, finding that balance in our lives, in a sense, is a multitasking activity.  However, even when we multitask, we still only really do one thing at a time.  How can we be at two places at once? 

A more literal image that comes to my mind when thinking about balance is a scale; like one of those old manually balancing ones.  Depending on which end of the scale things become overburdened, the scale ultimately ends up tipping over towards that one direction.   For example, if a spouse is out of town, and we single-parent for say, a week, the stress and irregularity of that week will end up causing us to use up much more of our own energy than what we are used to.  Typically, the job is split between two parents.  This type of situation, where a spouse pulls double duty, would cause that life-scale to tip to the overburdened side - the spouse in charge of the kids and the house.  These type of situations would cause us to feel like we had lost our balance.  When we lose our balance, it feels like the spiraling chain reaction signals our brain to think that we need to do a better job at keeping the momentum moving forward.  We crave for things to move forward at a comfortable steady pace, in order to keep that dauntingly large life-scale at just the right angle, so that it stays centered.  We do this all in order to achieve the all-too-desirable balance. 

This process leads me to revisit the question of why then should we bother to find or create a balance, when it takes so much darn energy?  Especially when as special needs parents, we don't have much of it to begin with.  I mean, is it truly worth all of the effort?  Well, if I search deep within and tap into a purely intuitive response, my answer is always: to be happy and to have peace of mind.  Part of having that peace of mind however, is to know that I did whatever I could to create that balance, so that later on I could in turn have that peace of mind.  The ultimate goal then becomes holding on to that peace (and also, that piece) for as long as possible.  But after all, it doesn't last long, unless I work on creating, recreating and achieving that sought-after balance on a regular basis.  I truly believe that when we have this precious balance in our lives, we are happy and at peace.

Don't Forget To Nurture (Yourself)

Military life with twins and a special needs child has been a very unique experience.  All of our kids have undergone speech therapy.  As I've discussed in other posts, for the twins it was a pure speech delay, and for Jake it was autism related.  There was a time period when all three kids were in diapers simultaneously and not talking yet.  I know that the stress of that time must have taken a toll on me.  At the time my focus was on moving forward, no matter how slowly.  That seems like ages ago, but it was only a few years ago. Life has definitely caught up to me now in my forties.  It is not only about taking care of the family and balancing it with part time music teaching anymore, it is doing so while managing the daily aches and pains that have caught up with my body.  This has made me realize that I can’t just keep going and going without taking time to regularly nurture myself.

There is almost an underlying pressure that as special needs parents we have to be a super mom and a super dad, to keep our family unit functional and healthy, as well as to nurture our marriage and relationship.  I can assure you that I am no hero.  It is a situation where special circumstances had dictated the course of our family path and I wouldn’t change a thing if I had to do it over again.  I truly believe that we were meant to walk this very specific path and learn what it is that we were supposed to learn on our family journey.  I try to do what I can for my family, just like everyone else out there who has similar joys and struggles (and there are so many more joys and moments that take my breath away that outweigh any given struggle). 

In the past I had fallen into the old motherhood trap, where I focus on mostly everyone else but me.  This is something I know many other moms have done and will continue to do.  Lets face it - it's in our nature to do so.  While this is admirable, it is not the best thing for our health.  Granted, certain family situations may be much tougher than others, but we can only experience our own family situation and make it functional for us.  When I am having a difficult time, I try to remind myself that there is always someone having a tougher time, as well as someone having an easier time.  Thinking about this puts things right back into perspective for me.  

The worst thing that we can end up doing to ourselves, in retrospect, is forgetting to nurture and to take care and ourselves too.  When we carry on this way for a long time it becomes ingrained into our muscle memory, affecting our daily life and routines.  Just like learning a piano piece with the wrong fingerings, or wrong rhythms, where you repeat the wrong motions over and over, it becomes ingrained into muscle memory.  This is where repetition of actions leads to an automatic response over time.  Subsequently, in order to correct this error, we have to slow down our practicing to the point that we could reconfigure our muscle memory, and relearn the correct motion.  Equally, in parenting and special needs, it would be correcting our thinking and behaviors of not making time to nurture ourselves.  At that point, it's very difficult to break out of this cycle.  Change, as I know all too well, does not happen on its own, out of sheer will.  Change initially starts mentally, by slowing ourselves down enough in order shift our attitude, change our habits, and ultimately, taking action in a different direction.

One quote comes to my mind here:

"Life begins at the end of your comfort zone."

Neale Donald Walsch

Does this resonate with you too?

Over time, many things for our family have become so much easier.  Just the kids getting a little older has made a huge difference.  With autism however, as certain things get easier, different life stages present new challenges.  These new challenges are unpredictable and are so different for every individual on the spectrum.   Ironically, with being in school for so many years and having so many wonderful and beloved teachers, my son Jake has been the best teacher yet.  Yes, this cute little guy has been the most amazing teacher for me.  He is the one who has taught me to think about things in a completely different way.   He has taught me to think outside the box and to see things from new angles.  He has taught me to be a better person and a better mother to his younger siblings.   He has taught me to embrace life’s challenges and to focus my energy on the most important things.  I am so very proud of him and how far he has come.  I love his beautiful gentle spirit and his smile that melts my heart.  And I am so proud of our family and the love that we have for one another.

Setting A Few Specific Goals

What has probably helped me the most in creating a balance between family life and me time, is setting only a few specific goals and a concrete plan to be successful at achieving them.  One of my personal goals was to be more active.  So basically, anything new that I was going to start doing would mean being more active.  Jokes aside, I have been going for walks more often, and riding my bike when the weather is nice.  This is something that I want to keep going for the rest of my life.  It was important for me to choose an activity that was not overly taxing, that would be something that I could realistically envision myself continuing long-term.  It has become one of my favorite unwinding as well as energizing activities because it gives me a chance to have silence and to clear my head.  Silence is golden! As I like to teach my music students: silences are just as important as sound.  If we have non-stop sound, our ears get washed out with stimuli.  We get tired of filtering information, and then the music becomes the background, and not the most important thing.  The same holds true in our lives.  We need silence in order to process things and clear our minds.  This makes room for new information to soon get processed by an attentive receiver - us.   On the other hand, if I happen to crave stimuli, I listen to music while I walk.

"The music is not in the notes, but in the silence between."

Wolfgang Amadeus Mozart

Downtime

I prioritized plugging into activities that I enjoy for my down time.  Sometimes that means getting together with a friend over coffee, a dinner out, being creative, stretching (I like to do a mishmash of things I’ve picked up over the years: yoga, dance stretches, physical therapy stretches and Pilates).  It's easy, as moms, to feel guilty if we're not doing something constantly around the house.  After all, when we are at home, there is always something that demands our attention.  There is always something that needs to get done - the job is endless.  I therefore work on fighting the urge to get house stuff done when I'm exhausted, and I just let my mind and body rest without guilt.  I'm not always successful, because just the nature of being home begs to get something done, so I make a conscious effort to make downtime for myself.  It is the best gift that I can give myself.  This makes me so much more of a quality person for my family.

Moving forward in the new year has been about a journey to find my balance.  It is what strikes a chord in me, what motivates and moves me.  It sets my wheels in motion.  And sometimes, when I am parked in place a little too long and need some support, my husband Alex gives me a gentle loving push on the back and this momentum gets me propelling forward once again.  And sometimes, I just take a nap.

How do you like to create your balance?  I would love to know what strikes a chord in you.  Feel free to share here in the comments bellow.  I will part for now with a little old Irish saying, as you move forward in the new year:

The Perfect Rose

The Perfect Rose is a companion piece to my second post: 1-2-3 And Nobody's Talking: http://lilybrose1948.blogspot.com/2012/10/1-2-3-and-nobodys-talking.html  I wrote this piece as a means to track and share about the changes that we've recently experienced with our kids' progress in their individual speech therapies.

Things have not been as black and white for us as I had hoped, but we try to do what we can.  We continue to facilitate learning, to plug into the necessary ports and move forward.  Reading my previous post first, will present to you what had preceded the point at which we have arrived today, and give you a more complete picture.  We have lots of good stuff to look forward to - all the way around!

Jake at a local pumpkin patch farm

Talk is not cheap 

For our family, talk has been nothing short of cheap.  I mean this in the sense that all of our kids have had to go through speech therapy.  Thank goodness for our military health insurance - a huge perk! Had we been paying out of pocket for all of the speech therapy that we've accrued over the past few years, we would be hurting worse financially.  In the civilian world, our life would in no doubt be more complicated in this respect.  We would do what we had to do regardless, and we would find a way to make it work.  It is no wonder that non military families facing special needs take a much harder financial blow, and that's just speaking inside the US.  Granted, many non military families have the ability to make larger incomes than military ones.  It is often at the expense of longer work hours, which means less family time, less vacation time, and poorer quality of health insurance coverage. 

Autism - Past and Present

We are fortunate to experience autism not only in the US, but in this day and age.  Some thirty, forty years ago, it was commonly misdiagnosed with mental retardation and schizophrenia.  Autistic individuals, including very young children, were isolated and institutionalized.  It makes me absolutely furious and horrified at the type of misguided treatment endured by especially vulnerable individuals in our society.

Can you imagine being a parent back at that primitive (comparatively speaking) time, having a psychiatrist pressure you to institutionalize your child?  Imagine how much tougher it was on parents back then.  Moreover, it was all too common to cast blame on the child's mother.  Yes, that was done too - when in doubt, place guilt on a mother, as if mothers weren't going through enough heartache already.

Even though autism has been around for a while, in this sense, it feels like a fairly new field.  There is still so much to discover - so many unanswered questions.  We are hearing more and more about it possibly because it is being diagnosed more accurately now, and therefore, more adequate therapy is being provided.

ABA therapy, (Applied Behavioral Analysis) which has been scientifically proven to help individuals living with autism, is thankfully covered by military insurance.  Out of pocket, it runs an astronomical $3000 per month in the US!  Research repeatedly points to the two main components being environmental and genetic factors.  It is for the most part though, still a mystery, even though our family and other autism families across the globe, live with it 24/7.

Alex and Max

Tick Tock Clicks the Clock

In my post, 1-2-3 And Nobody's Talking, I share about our journey with all three kids learning to speak.  The twins had different issues than Jake; they were naturally more on a similar time frame with each other in their language development.  Over the past few months, they have well surpassed their older sibling.  While we are absolutely thrilled, delighted, and rejoice in all of the progress that they've made, this has been bitter-sweet for us in one respect.  It sets in the reality of Jake's developmental delays even more.

This is the reminder that we are at a race against the clock.  The clock is ticking, and we need to equip our son with skills and tools to help him lead a fulfilling life.  Whether we consciously think it or not, it is always an underlying pressure.  Tick tock; there is only so much that we can do at any given point.  The rest?  The rest is letting nature take it's course.  How do we know when to take a back seat in this learning process?

I have those days where this reality hits home pretty hard for me.  It is not easy not to take it to heart, but I try to think about the many positive things that are happening in Jake's life, and the ongoing progress that he is making at his own pace.  Doing this, is like shifting into another gear, in a way, and selecting the right way to think about it all.  Our thoughts are a powerful thing.  It is so important to keep positive and encouraging, because our children depend on this kind of energy from us - they depend on our hopeful spirit and loving heart.

My son Max, is so in tuned to what others are feeling.  Just the other day, when we were sitting at the kitchen table and I wasn't feeling well, he asked me "Mom, why are you sad?" He thought that I was sad because I was quiet for what he deemed of as too long.  His precious heart just wanted to make sure that I was doing okay.  That was a little reminder for me, of how much our kids feed off of our energy.

We choose to take a realistic approach to accepting where Jake is at any given point in his development.  He is such a wonderful, smart, sweet, gentle boy with a kind spirit.  His smile just makes your heart melt and his words are music to my ears.  Keeping things in perspective though, we have no delusions of autism being a life-long condition.  We are in it for the marathon and not the sprint.  Therefore, we have to pace ourselves for the long haul. 

This is why all of Jake's small successes are a big, no, a huge deal for us.  The other morning, for example, Alex told Jake "I love you," and he answered back "I love you too."  He had never done that before!  Typically, he would repeat the words "I love you" back, or "I love you, please."  He would often tag a "please" at the end of many of his phrases.  Saying something in the correct and functional way is always exciting for us to hear; It is a little special blessing to our day.

Dad and son at a football game - every outing is a learning opportunity

The ABC's of ABA

Jake's speech issues are directly linked to his autism and global developmental delays.  He is now blurring words together to the point where it's hard to understand what he's saying part of the time.  When he does speak coherently, and we don't expect it, we then make a big deal about how awesome that was.  We'll give him lots of reinforcements: complimenting, tickling and hugging, and of course, give him whatever he may be requesting at the time.

To be more specific, he was already at a point where he was speaking more clearly, using up to 5 - 6 word sentences (one sentence at a pop).  He had previously gone through a several month stage of (for lack of a better word) grunting out his words.  This, if you can imagine, is disheartening to see, as he's made a lot of progress already.  This can feel like a step back.

As I've previously mentioned in an earlier post, with Jake's development, it's two steps forward, one step back.  We just have to hang in there emotionally during the step back time, because all of the steps collectively, are a part of the larger learning process - not just for him, but for us, his parents, as well.  Don't give up hope when your child takes a step back - this is not uncommon with autism.

Through the guidance of our BCBA, (Board Certified Behavior Analyst) we work on this by withholding things that Jake wants, until he says a word/phrase correctly (without grunting it out or blurring words together).  This is what in ABA speak is called  a motivator.  For example, if Jake wants a snack or his IPad, we insist that he requests coherently before giving him his desired object.  He can do it, he just has to be motivated to get what he wants.

This principle, pretty much goes against every parent's natural instinct of unconditional love, of giving their child what he wants, and not withholding it.  Much of the ABA principles are completely unnatural for a parent to perform.  It's almost like learning another language for us.  We have had to become fairly fluent in ABA in order to facilitate learning and help our child around the clock, when therapists are not around. 

The concept of a child having to be motivated to perform a request, should not be confused with laziness.  Speech and social aspects are the two main deficits in autism - "the big-hitters".  What comes naturally to a neuro-typical child, like easily requesting a desired object, does not necessarily come naturally to a child with autism.  Basically, different wiring in the brain causes simple things to not be so simple here.

By reinforcing ABA therapy principles, we are able to teach our child how to perform an action.  That one action, (to an inexperienced observer) which may look like it came naturally to Jake, probably took many many repetitions to achieve that "simple" result. 

The lesson here is, 
don't take anything your child does for granted, 

because that simple thing that you see your child doing daily, 

may be much more difficult
 for the child that lives right next door.

Miriam and Max playing in the back yard

Double Time

For the twins, it was initially a speech delay (meaning their speech development was behind that of their peers).  While they have caught up in their vocabulary, they now need some work on articulation.   By the summer of 2012, they were catching up verbally, so we started phasing them out of speech therapy.  While they had caught up language wise since then, they have recently showed recurring as well as new articulation issues in their re-evaluation.

I wondered and asked if these type of issues were age-appropriate, and whether they would resolve themselves over time.  The therapist did not think so, and wanted to address these issues on a regular basis with them.  It's not a scary thing for me, as it was early on.  Back then, they weren't speaking at all (by the age of 15 months), and we feared possible special needs.

Over time, we realized that there weren't special needs involved, other then what I refer to as a "pure Vanilla" speech delay.  This time, we can approach it with a lighter mindset.  They will go once a week to their back-to-back half hour speech sessions, and we will reinforce what's necessary back home.  We are probably looking at several months to a year's time frame. 

Gratitude

You will never hear me tell a younger parent that "once they start talking, they don't stop, and you just want them to be quiet for a little while."  I love the sound of my children's voices and all of the things that they say, even when they are being obstinate.  I still love having them verbalize their feelings, and I mostly try to keep my giggle on the inside, as I find (most of) it very cute.

Having them be where they are today, I take as a blessing with open arms and a thankful heart.  When I keep things in perspective, I am more inclined to be appreciative of how far all three kids have come.  The same holds true for how far Alex and I have come in modifying our parenting approach and adapting to the challenges that we have faced along the way. 

One afternoon, I sat in the courtyard garden of Baptist East Hospital, where all three of our kids go for speech therapy.  I go to the courtyard when it's not too hot and humid as it typically is in the deep South on a summer day.  Catching a quiet moment of solitude and reflection, out of the corner of my eye, I spotted a perfectly blooming rose.

Within that one passing glimpse, this one rose captured all of the beauty in our family's journey.  It was as if the thorns on its stem represented the parents that had to grow a thicker skin, in order to undergo the daily in's and out's of life with autism and speech delays.  They are the protectors, advocates and nurturers of the beautiful flower head, the young child that blooms and grows, reaching his full blooming potential when tended to with care and with love.

That summer's day, that one rose had a very personal meaning for me.  It represented a symbol of hope; and without hope, we couldn't have possibly come as far as we have today.  Our inner thoughts are an incredibly powerful thing.  They affect what we say and how we respond to others.

With this message I convey to you to never give up hope, your inner fire, your inner flame.  Find meaning in the little things that can inspire, like the rose did for me.  Life with special needs can sometimes seem like an uphill battle, but you have to push through those moments of doubt and weakness and stay the course for your family.  It is with hope for the future, and gratitude for all that we have been through at this point in our lives, that we can keep climbing.  The key, is to do so without losing sight of where we are headed, and all of the beauty that is yet to greet us on our path.  We have yet to experience all of the high points of this uncharted landscape.

The Perfect Rose - Montgomery, Alabama

Visit my blog:  

Lily and the Roses ~ 

Creativity with Autism, Twins and Military Adventures 

http://lilybrose1948.blogspot.com

Leave me a comment if you find any of my posts meaningful to you.  Feel free to share posts with your friends to help us raise autism awareness and acceptance.

 

Visit my other blog: 

Creationlily.blogspot.com 

Where I display 

my artwork, music compositions and travel photos 

Stop by and share posts with your friends

Creationlily

Book on the Roof

A couple of Sundays ago, Alex left for the Army JAG School in Charlotsville, Virginia.   We had been there together several years ago, when Jake was a baby and Alex had a military course.  It is a lovely area with great restaurants and beautiful scenery.   As the days got closer, I felt myself getting more stressed about holding down the fort on my own.  Knowing I wasn't going to have an easy week ahead, Alex gave up his usual Sunday morning to sleep in.  Those two days in a row of sleeping in, almost felt like a mini-spa vacation weekend, especially, since during the following week, I barely slept.   Still, I was anxious about the week that was coming right up, but more refreshed than usual, thanks to my thoughtful guy - a true mensch.

Max, remembering that his dad's last trip was to Alaska, would say throughout the week "Dad, I wanna go wiyou Awaska."  Alex would correct him and tell him that he's not leaving yet, and that he's going to Virginia this time.  "You go Ginia Dad?" Max would question.  "How about the next time Dad goes to Alaska, I take you with me?" to which I quickly added, "make sure you mention, not on business, because you could feasibly get sent there again."   So at some point down the road, Max will be looking forward to a trip to snowman's land, because a child mostly hears what he wants to hear, of course. 

Alex was gone by 9:45 AM that Sunday morning.  As the clouds came into alignment at high noon, little disasters start brewing and stewing, revving up their engines; contemplating what to throw my way, and in which order.  It was only a matter of time before I get hit with the first one.   Like clockwork, there are always potty accidents when dad goes out of town.   It didn't happen just yet, but I was anticipating it - trying to get into a defensive mode of play.   The Wonder Woman costume was proverbially coming out of the closet, and as an emblem, getting thrown on.  The invisible jet hovers over the house in preparation for the first indication of trouble.   Low and behold, it came from the least likely source, later that afternoon.

Mistake #1 - Why did I bother trying to get the twins down for a nap today?

I hand Jake his IPad after lunch and proceed to get the twins down for a nap.  Before I know it, I am in there for a whole hour.  This already leaves me slightly agitated so I decide to leave them in there, to see if they quiet down and go to sleep on their own.  I know that this was probably wishful thinking.  It has happened on occasion though, and I needed the break.  I then take Jake outside to play.

Mistake #2 - Why did I let Jake take his book outside?

Over the past couple of weeks, Jake has been trying to take his toys out into the yard.  Big hit items include books, stuffed animals, and anything else that he can get his hands on; throwing it up in the air to see what happens.  That sounds like a good enough plan.  From past experience, I've learned to block him from taking his stuffed animals outside, as they often end up getting thrown into the neighbor's yard.  I can fully appreciate the thrill factor for him.  The book, well, he mostly wants to hold it while he's on the swing or the slide.  So what's the worse that could happen, right? 

Wrong!  At that point I remember that I ought to go in to check on the twins, as they are not yet quieting down.  I open the door and witness the twins in the process of busily moving Miriam's bed across the room; Max simultaneously informs me that he needs to go potty.  We take care of this matter, and I order the troops to get back to bed, as I shift gears into my tough authoritative tone; letting them know that I'm not playing around this time.  Out I go into the back yard, and see that Jake clearly appears to be very irritated.  "Book, book, I want book."  I realize that his book is missing.  I start looking all over the yard for it, asking him what he did with his book, and why did he take his book out there?  I then turn around to face the house, giving into the notion of a possible ridiculous scenario.  I slowly lift my head to look up.  The book is on the roof! Oy!  Threatening to take the book away if he does this again, I resort to that (mostly) authoritative tone; realizing that yes, I shouldn't have let him take the book out there in the first place.

The book on the roof

Now what? My kid is upset, and his book is on the roof!  It's not the kind of thing that you'd expect to see at someone's house on any given day, but there we were.  If there were only a fiddler up there to ask for help (I chuckle on the inside).  In past scenarios, I've gotten Puppy (his favorite stuffed animal) off the roof when it was close to the edge, but I wasn't sure that I could reach the book.   Thinking on my feet, I go to the laundry room to get the step ladder and kitchen broom.  I march back outside, feeling less then thrilled, proceeding to climb up the ladder with my fuzzy slippers and polka-dotted bathrobe.  Moments later, I triumphantly rescue the book off the roof.  Returning it to Jake, I remind him that throwing the book on the roof again, will result in its confiscation.   I then should have had Jake go back inside.  The day was still young however, and I didn't want him to be inside for too long, fearing he would get restless.   That is our most encountered issue during the weekends.  Before I am able to make the right call, I get distracted with noise coming from the twins' room.  I go back inside to have the cute sleepy-eyed energizer bunnies come out and play in the family room. 

Mistake #3 - Why did I leave the twins to "nap" in their room after I checked in on them for the second time?  The third time I return to their room, I see that their room has been basically flipped upside down - the stuffed animals are all over Max's bed, and books are scattered all over the floor.  I hurriedly start cleaning up, fearing that I am probably nearing the next strike of disaster, and remember that I ought to check up on Jake.  I go outside.  It's like Groundhog Day: "Book, book, I want book,"  my son exclaims.  This time, Book is farther up the roof.  I shout "Jake, I told you not to throw the book up there again!"  Followed by "This time Mommy can't get it down!"  I figure that the book would probably just get blown off at the next wind storm, or eventually disintegrate in the rain.  In any case, it was a job that was not going to get completed on this day, by this one mom.  We came back into the house and I return to my unfinished cleaning project.

As I putt items away in the twin's room, I notice that Max's bed is covered in gold glitter.  I couldn't figure out how the glitter got there, but now there was the additional task of shaking out the sheet and remaking the bed.  One task leads to another, and another task, followed by yet another, in a string of miscellaneous tasks; a glorious taskophony!  When was it going to end?!  Max's voice interrupts my cluttered thoughts with "Miriam peed!" Okay, I thought, I will take care of it when I'm done cleaning up (reassured that she's in a pull-up).  A minute later, I hear him say the same thing, and then Miriam comes to inform me of the unpleasant news, in an unhappy tone.  I go to check, and think oh, no big deal, as I see the pull-up.  Two seconds later, I quickly do a double take.  I realize that it's not a pull-up; she had put herself into underwear all by herself, for the first time!  It had to be on the weekend I was on my own, of course.  As I go to change her, she starts to lose her balance, hits my face with such a force that you wouldn't expect to come from the hand of a three year old, right onto my glasses.  "Ouch!" I respond loudly.  This causes her to cry, adding to the unfortunate stringed series of ridiculous events.  I have to stop everything to take the necessary time out to comfort her, before anything else.  To make a long story short, we got through it.  Everything and everyone (eventually) got cleaned up.

It was just about time again for the brewing of the next disaster.

I take the kids to play in the back yard and within a couple of minutes, I notice that Jake is holding Book again.  But how??  I slowly look up at the roof, and there is no book up there.  How did this happen? It wasn't windy outside for the book to blow off the roof.  It wasn't even breezy, for that matter.   Maybe it was the invisible jet, or perhaps it was the fiddler on the roof?  Why not?  I came up with all sorts of ideas just to lighten up my deteriorated mood.  I needed a good laugh, but I had absolutely no practical answer to this dilemma.

My little Fiddler lost his violin bow in San Antonio

The following day I was playing with Jake outside, and he said "book!" again.   He got up on one of the lawn chairs and motioned up to the roof.  Much to my dismay, there it was - after all the trouble yesterday.  That little book was up there on the roof, again.  It wasn't however situated at the same spot from yesterday, but several feet away at the crease of the roof, and several feet higher.  I chalked it up to not having seeing it there yesterday, possibly due to the way the light hit the roof.  I still couldn't figure out however, how the book had moved several feet over from it's original location.  Even so, my child wanted his book, and I had no idea how to get it.

After I returned home from picking up the twins, later that evening, Jake's ABA tutor told me that Jake did something very clever.  When they were playing/working outside he said "book" to her and climbed on the lawn chair to motion for it, as he had done so with me.  She looked up, saw the book, and most assuredly said to herself, holy cow, there's a book on the roof! - "how do we get it down?" she asked Jake (not anticipating a response, but just talking out loud), to which he actually answered with an unprompted reply, "throw the ball!"  Thrilled to have him verbalize this, she texted me as I was driving, disclosing that something exciting had happened back home, but didn't give away the surprise.  She did as Jake suggested.  She threw the ball up at the roof several times, finally hitting the book.  Sure enough, down came Book.  

#1 smart thing that I did all day?

I hired a babysitter from 4-8PM and went to see a movie and have dinner with a friend.  Ironically, the movie was Silver Lining.  By the time that 4PM rolled around, I needed the break from all the mishigas (chaos, in Yiddish).  This felt like I was intelligently able to plan ahead for some down time, and I was pretty pleased with myself for concocting up this wicked little plan.   Later that evening, it initially took me half an hour to get Jake to sleep.  After talking with Alex that night on the phone, I heard noise coming from Jake's room and saw that his light was on.  I realized that this wasn't going to be a quick fix, as nothing was that day.  It took me an additional hour to get him back to sleep.  This was day #1 of Alex's week away.  I felt reassured that it would be the most eventful one here.  The rest should be easier coasting.  As the school week begins, I would have some time during the day to pace and recharge myself for the kids.  

After Alex returned home from his trip and previewed this current post, he said "so that's how the book got off the roof  - Jake had thrown the ball up there all by himself and knocked the book down that way."  Now, why didn't I think of that? Apparently, I did not give my son enough credit for his clever problem solving skills, although, I had always said that he was a good problem solver, hum!

So what do I take away from this experience?  How do I try to be more prepared for the next time that Alex goes out of town? What is the moral of this story anyway?  I came up with the following:

Trying to have a "normal" day when your co-captain-teammate is out of town, 

is like thinking that you can escape to the roof to read a book;

It doesn't happen very often.  

So get through it as best as you can.

Don't worry about being graceful or being judged,

and laugh about it later over a glass of wine.

We are a team, Alex and I.  We do the best that we can.  We both make a big effort on our individual side.  I do more with the kids when he's gone, and he has to endure being away from the family and the comforts of home.  We make mistakes.  We try to learn something from them.  We move on to the next thing.

To other military moms out there, who endure similar scenarios when a spouse is away;  I salute all that you do.  Be brave holding down the fort, and may the power be with you!

What are some of your tips for making this kind of scenario work in your home?  Do special needs or other a-typical aspects play into your family equation?  I'd love to know if you have any suggestions or funny bits to share.  Feel free to post your ideas in my comment section bellow.

Cheers!

Lily and the Roses

Absence Makes the Heart Grow Fonder

Today I dropped off my three and a half year old twins, Max and Miriam at the Air Force base CDC (child development center).  Usually, Alex drops them off on his way to work down the street, but he has been out of town for a case.  Walking into the class room, there was a little boy standing sadly and quietly crying in the entry way.  I automatically thought that he was probably having some separation anxiety, as I have seen many times before with children this age.

During the few minutes that I was there, taking the twins' coats off, and snuggling and kissing them, I noticed that this little boy was being comforted by one of the teachers, but that he was still sad and crying.  It seemed different then when I typically see kids that cry out of separation anxiety.  They are usually more vocal about their parent leaving them at school, and more stressed about the situation.  I felt compelled to ask the teacher if separation anxiety was truly the cause of his demeanor.  The teacher told me that the boy's father had just returned from a deployment, and had literally dropped off his son just then.  It was the first time the boy had seen his dad in what must have been at least a several month separation.

The most valuable gift that you can give anyone is not a material possession, 
it is your time, because that time will not come around twice, 
and you can never get it back.

 

By the time his teacher finished her sentence, I felt my eyes tearing up, and my heart starting to ache.  I wanted to reach out and hold this sad little boy and comfort him.  Instead, I asked Miriam and Max to go up to him individually, and tell him "I love you - you are my friend - it's going to be okay."  They were so sweet.  Max even had a little pouty face and was very gentle when hugging his friend.  I told the twins "we have to be nice to our friends when they are sad."  It is important that children who have gone through a lengthy separation from a parent due to deployment, that other kids get involved in being supportive and understanding, and not just the teachers.  It is important, because many of these young kids will also experience this type of separation.  They will need the interaction and support of their school friends, to help fill that void and temporary loss.  This is where they spend most of their day, if they go to a military CDC.  Their friends will see them longer during their day then their parents will, aside from weekends and holidays.  Teaching children to be a good supportive friend can start from very early on.  This can be of great help to the child that misses his parent for months at a time.

Alex with Jake, and Max sneaking by - San Antonio, Texas 2011

I suppose that this hit a personal note for me, because our family had also endured a not-so-easy deployment.  Jake couldn't even tell me if he missed his daddy, because he was only two years old and living with autism (this was several months before we knew he was autistic).  Before Alex left for Iraq, I shot a little DVD of him reading all of Jake's favorite bed time stories in Jake's bedroom.  I would play that DVD for half a year for Jake, featuring a different story every night before going to sleep.  Alex also had several messages that I would play for Jake for times that Jake was sick, weekend morning greetings from Dad, good night messages, and a special message to be saved for Jake's birthday.  We also ordered a "Daddy Doll" for him.  This is a pillow doll with Alex's picture print on it, and Jake would sleep with it every night.  Dads could have these dolls made from their deployment locations, where they would have their photo taken and imprinted on the doll for their child/ren and send them back home as a gift.  These ideas were some of the ways we kept Alex's presence and spirit continuously with us.  We would also skype once or twice a week, but it was difficult to have Jake hang out by the computer for more than a couple of minutes.   In any case, we did what we could to have Alex still "be with us" at home.

The military lifestyle is not very easy for children in cases of work related travel and deployment.  As far as our twins go, we haven't even begun to feel the challenges of uprooting them from school for a PCS (permanent change of station - a military move to a new location) because they are still young. But with Jake, the last move took a few months of settling into the new school and therapy programs.  We felt a backslide in his developmental progress due to this major change.  We are enrolled in the EFMP (the Exceptional Family Member Program) which protects us from moving to a location that does not have adequate services for Jake's special needs.  We complete an exit interview prior to moving to a new location to make sure that all of the paperwork and services are in place.

In one of my previous posts, Pregoploymentcy http://lilybrose1948.blogspot.com/2012/11/pregoploymentcy.html  I discuss passive versus active support that I received during Alex's deployment, and how we need to collectively have more active type of support during deployments.  I was pregnant with our twins as well as learning of autism signs in Jake.  I was also teaching music at a local university during Alex's deployment in 2008 and coping with much of it on my own.  As I mentioned above, Jake couldn't tell me if he missed his dad.  I believe that we need to do what we can to actively support children as well, even though the one parent that's left behind at home does what he/she can to compensate for the other parent's absence.   We should not wait and hope that someone else will step up and do it instead of us, because we are busy with our own lives.  We have to take a personal approach to this and a personal responsibility, especially if we have already experienced the hardships of deployments ourselves.

When you come to know of a family that is enduring a deployment, 

think of that one little boy, for he will soon grow up.  Some day, he will possibly be 

some other little boy or girl's dad, 

watching out for families in our heartland, 
far away from home.

Visit my blog:  

Lily and the Roses ~ 

Creativity with Autism, Twins and Military Adventures 

http://lilybrose1948.blogspot.com

Leave me a comment if you find any of my posts meaningful to you.  Feel free to share posts with your friends to help us raise autism awareness and acceptance.
 

Visit my other blog: 

Creationlily.blogspot.com 

This is where I display 

my artwork, music compositions and travel photos 

Stop by and share posts with your friends

Creationlily