Getting Back Into Focus

We moved from Montgomery, Alabama to Satellite Beach, Florida in the summer of 2014.  I haven’t posted since then.  We enjoyed the beach style living for three years.  My quiet walks along the beach, breathing in the ocean air and picking seashells, are especially memorable.  During this long pause of no writing I felt that I was done processing, reflecting, and healing from the ups and downs of living with special needs.  I was done, I thought, or at least for a while.  It was time to move forward, accept things as they were, and let life settle.  I was forty-five years old, and it was time to take care of myself a little bit more.  

In addition to the piano playing which I always continued, I began jewelry design and joined my mother in acrylic painting classes.  These hands-on activities provided me with a much needed creative and therapeutic outlet.  In hindsight, I should have also continued writing.  It would have been a huge help and comfort to me in dealing with the challenges that were heading our way.  It could have continued to be one of my creative outlets.  I suppose I was craving some means of expression without having to put thoughts into words.

In July 2015, after our first year beach-side, Alex deployed for half a year; not including the obligatory month of pre-deployment training.  This was his second deployment to date.  Five weeks into this deployment, we had to move out of the house for three weeks due to mold growing in the air conditioning ducts.  We had our belongings moved into storage, and a complete move back.  I had to put everything back mostly on my own upon our return; “a move within a move.” As you can probably imagine, I was less than thrilled.  

To make matters worse, during those three weeks of not living at home, Max broke his arm at the playground.  I felt as if God kept piling on the challenges for me.  The deployment itself was a big enough challenge to get through with a special needs child and twins. Fortunately, my in laws came to help during that chaotic period.  At that point my spirit was broken.  I went to see a counselor at the base who specializes in deployment and reintegration issues.  I saw him for the rest of the deployment and he was very helpful.  

My parents came later that fall. That daily help, especially with driving Jake, was priceless.  My “snowbird” parents came for six months a year and stayed in a townhouse near us.  When the three years were over, it felt like an end of era. I knew that I would greatly miss not having them near by and not be able to enjoy their company anymore.

Jake had excellent autism services at The Scott Center for Autism Treatment, so I was committed to making the daily drive.  I either had a two hour round trip, or an hour long trip if I stayed there for the three hours. It was not ideal. After his three hours there, I took him three days a week to Achieve therapy for speech and occupational therapy.  This was great for him as he received both speech and OT simultaneously. This enabled him to move around the room for breaks and not be stuck at a desk after a long day.  By the third year, I was exhausted from the daily drive to and from therapies.  I was ready to get back to in home therapies, even if it was just at our next location.

Jake had made significant progress, most noticeably during the third year.  I was heavily involved in his final month of therapy.  I was getting trained in learning to reinforce all the skills that he’d mastered, so that we could have a smooth transition to our next location.  I felt very confident that I could help him through the move.

We lived in the south for our first ten years of military life. We moved in late July 2017 to Virginia and I was excited to experience the beauty of four seasons again. Since the school year started much later than in Florida, Jake was out of school during the summer longer than he’d previously been.  At our new location, Jake was out of school and therapies for an additional five long weeks.  This was a tough period due to the inevitable regression he experiences every time we move.  While I knew that this regression was unavoidable, watching him regress with dwindling speech and a return to some old behaviors, such as vocal stims (making sounds is a stimulatory act for some autistic people) and mostly pointing to things, was especially difficult to observe.

We came to Virginia with Jake in May to house hunt and set up therapies.  We thought that seeing the new place would ease Jake’s transition. We were then told that by the time of our arrival Jake would be able to start therapy right away.  Unfortunately, that was not the case.  Due to a shortage of therapists, we were still on waiting lists well into the start of the school year.  This extra long period without therapies exacerbated Jake’s regression.  It was a very isolating period which took a heavy toll on me emotionally.  The way I got through it was with Alex and my parents' support, and telling myself that this is only temporary.

When school finally started Jake began to normalize.  He had missed his predictable daily structure.  Soon after, we started with twice a week speech therapy, and once a week occupational therapy. ABA (autism therapy) started a little while later, but we are still now only at twice a week – when he should be receiving five days a week.  Over the past few weeks, Jake started doing an ABA social skills group on Saturdays.  It’s been a slow start since our arrival, and we are not at maximum hours yet. This is pretty disappointing, as we’d heard such good things about therapies in the D.C. region. There really isn’t anything that we could do, except for rolling with it. 

Five and a half months in, and we have settled into our new home and are into a family groove. The twins are busy with soccer and school.  Alex started his job straight away and got into a routine quickly.  I don’t have to pick up Jake mid day to take him to ABA therapy anymore, as I had to in Florida.  Having the in home therapies has been so nice.  It provides me with more downtime and I’m able to get a lot done, practice my piano several hours a day, and give piano lessons.

Over the last couple of weeks a distant yet familiar urge hit me.  I recognized that I need to start writing again.  It was important that I figure out why I abstained from writing for so long in order to start writing again. This took some soul searching, but I eventually got there.  The life events that I shared above, took up my energy and my focus.  Now that we are settled and I have more time to myself, I am able to write again.  My head is much clearer and I can catch my breath again.  So here’s to a happy and healthy new year 2018 - A year I hope to bring continued clarity, personal fulfillment, and peace to us all.

Things That Make A House A Home

After a military relocation to our new home at another base these past weeks, I found the chaos of the move had set my spirit into a tizzy.  Even with months of preparations: giving away old clothes and baby gear to Goodwill, getting rid of unnecessary papers in order to lighten our load, the move proved to be difficult, nonetheless.  With boxes of household items and books everywhere, the box that I had wanted most to find was my piano music scores.  After several days of searching, my husband, Alex, thought that it may be in a pro-gear (professional items) box in the garage - go figure.  Funny, but after several military moves, I didn't feel much like a pro at all.  If anything, I felt pretty overwhelmed. I just wanted to get into some sort of groove as soon as possible.  I was fully aware that this was going to take some time and that I need to drastically lower my expectations and face reality. 

As summers typically go, with our child living with autism, it's not my favorite time of year.  I know that many families can completely relate to the lack of structure and difficulty in finding activities that would suit our kids.  Forget about not wanting to be exhausted all day long; we don't have that luxury that is quickly forgotten about during the school year.  There is only so much time that an average non southern native adult can tolerate in the heat and especially in the heavy humidity.  Every summer seems to present the same dilemma for me.  In fact, it feels like I just wrote something similar about the same time last year.  A summer of relocating however, brings with it additional challenges (on top of which, poor Jake was very sick for over three weeks before the move and we were both cooped up and exhausted).  Some of these challenges involve: getting to know the new area and figuring out resources (while trying to provide some sort of daily structure), making new friends of my own (this should actually fall at the bottom of the list, but lets face it, it's a very real need), finding autism support, dealing with "the broken record" (repetitive words and phrases that autistic kids say) and its effect on my psyche, escalated screams and tantrums (which I affectionately refer to as "the angry peacock" - if you've ever heard a peacock, you know how loud its calls can be), and last but not least, excessive demands for Jake's favorite activity, the king of all kings: the iPad; my dreaded arch nemesis.

You may be thinking that well, what's so bad about the iPad?  It can be used as an educational activity, right? If so, then you are indeed correct.  With some kids living with autism however, if not closely supervised, this activity can quickly turn into an OCD-like, undesired behavior such as: hitting buttons over and over, watching the same thing repeatedly or doing the same program repeatedly.  Somehow, Jake figured out how to get into YouTube and find his favorite Baby Einstein episodes.  He'll watch parts of it repeatedly, just to see the face of the Einstein's head.  We think that he got attached to this image from his baby days, loved it so much, and that image just stuck with him.  Perhaps it was his first childhood friend. 

Even if we delete YouTube, because it's in our user history, Jake figured out how to re-access it.  In the past, we have used the iPad as an activity re-enforcer/motivator in his ABA sessions, and it was incredibly effective.  When he's lounging, and not in therapy, we've set a time limit on it's use and give him transitional updates of how much time he has left in five minute increments.  We break down the last five minutes and announce 5, 3 and 1 minutes, before announcing that time's up, in order to ease his anxiety about the ending of the activity.  This helps him transition out of it into the next one.  For a while, he was only doing educational activities on his I-pad and we were very pleased to see how well he was working with it.  Since this summer's move though, old repetitive behaviors have come back with a vengeance.  This was to be expected.  After all, it's not our first time at the rodeo.  However, it isn't easy to deal with by a couple of not well rested parents.

After several weeks of being in this transitional phase of moving, feeling unsettled and no social time, we went to a Shabbat dinner at the Chabad community center and met some very nice families, including two who were also coping with autism.  Several of the other families were also new in town, so it was nice to be somewhere where others were going through a similar experience.  The newness of our environment, juxtaposed with some very old traditions like lighting the Sabbath candles, good food and good company, was just the thing to make our transition more comfortable.  I have to make a mental note and remember to find things and traditions that are familiar and bring us comfort when faced with lots of new things. 

Part of wanting our family to have a military lifestyle, is that we didn't want our children to feel like they were ever living in a bubble or growing up with a sense of entitlement.  We wanted them to grow up moving around, meeting new friends, seeing how other people live in other cities and countries. Exposing them to different races and religions would help develop a sense of acceptance of all people.  We wanted them to be able to be well adjusted individuals because of their life experiences.  We wanted them to be able to empathize and be accepting of all sorts of differences. This, of course, they are already learning at home, by being siblings to an autistic older brother.  We are already seeing what we hoped for take place.  The twins have adjusted incredibly well to our new home and their summer camp.  I am so proud of our kids!  Putting things into perspective is, in a way, like stepping away from the small details seen through a kaleidoscope, and seeing the bigger picture more clearly.  We sometimes can get easily caught up in the smaller details, but if we take a step back, the reality is so much simpler.

Good news! - this afternoon Alex found the box of my piano music and I eagerly arranged my scores (yes, by composer, in alphabetical order) on the living room shelf that's across from the piano.  Looking around, I see that things are actually starting to come together nicely.  I look at the wall hangings and masks that we have up from places that Alex and I have traveled to together.  There are still stacks of family photos waiting there for me to put up and fill up more wall space.  You know, this is probably the thing that I most enjoy doing after moving - decorating.  I plan on taking my time putting up the rest of the photos.  With each one up, I bond with the new home a little more, letting it also get to know its inhabitants a little more as well.  The military owned property in this little beach town is starting to look like a home; our home. With all the moves we've already had, and with more future moves yet to come, Alex really puts it best: Wherever you and the kids are - that's what I call my home.  I couldn't agree more.  

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.

The Locked Gate – A Key to Freedom

In the grassy courtyard of our old synagogue, stands a large doorway gate.  Its eye-shaped intertwining metal wiring gave view to a beautifully soft cloudy blue sky that Sunday morning.  In a glimpse that seemed to last quite a while, I had stolen a moment to capture this gate in a photo.  Meanwhile, Jake was swinging up into his own clouds, just a few feet away from me.  He joyfully swung up in the air, clapping his feet together rhythmically in delight; as if his feet were cymbals crashing in percussive accents into the air.  It is what I imagine the ultimate sense of childhood freedom to be - conducting our very own symphony. 

It is intriguing that a predictable repetitive activity would invoke such a sense of freedom.  We often think of freedom as something that breaks through the mundane, the repetitive and the predictable.   We imagine freedom as a destination and maybe not so much an activity.   But maybe, freedom is a sense of comfort in being happily suspended in the air.  When we look down, we have the safety of knowing that we are not far from the ground and when we look up, there is the sense of anticipation of how high in the air we are going to get.  I remember how thrilling it was to swing up in the air as a child. 

When did we lose that sense of fun over simple childhood activities?  When did that sense of freedom and wonderment go?  I still think that it is really only the simple small things, and appreciating brief moments in time as we live in the present, that will ever give us that same sense of freedom.  It may even restore that childish naivete that leads children to ask about what is so intriguing to them.

Looking through the locked gate, I realized that the appeal of taking time to appreciate where I stood was about the contrast of hard and soft – the gate versus the clouds.  Similarly, the hard-wired structure in our lives provides safety and security for us all, just like that locked gate provides security to whoever stands within the confines of those grounds which the gate protects.  It does so all the more for a child living with autism.  This child craves and needs this daily security and a predictable schedule.  He needs the security of a structure with a repetitive rhythm so that he knows what to expect.  This helps to alleviate any anxiety about what is coming up and what he can look forward to.  That repetitive rhythm, just like the rhythmic swinging in the air, creates a comfort and pacing for him; It is his key to unlocking that gate.  It is the key to alleviate anxiety about the unknown.  We all want to loudly crash the cymbals to our own symphony.  Wouldn’t it be something if each one of us could hold such a key in our very hands?

Was the sky so captivating to me that morning only because I was looking at it from a locked gate, or would it have been as beautiful and mystical to me without the gate that was in the way of my view? I wondered.  Is it only those unattainable, those unreachable things that still intrigue us, as if we were still that inquisitive child in the playground? Do we ever really lose the mystique of magical childish thoughts like what it would feel like to touch the sky, or to touch a cloud?  

Oh I have much to learn from this child that is always true to himself.  He is so determined, curious, and unapologetic and genuinely himself.  These are things that most people aspire their entire lives to achieve.  We want to feel that true sense of self and acceptance of who we truly are and to be happy and at peace in that moment in time.  This beautiful child is not burdened by silly thoughts of what others may think of him or how his interests may appear to others.  No, such wasteful thoughts have no place in his young mind.  He knows exactly what he wants, he is strong minded, smart and willful.  Most importantly, he holds the key that unlocks that gate, and is therefore free to be truly himself.

It was only a brief moment in time, there in the courtyard.  But in that moment of looking through the eyes of that gate, I saw there a lifetime of meaning and symbolism.  The key to unlocking that gate as a collective society is acceptance.  We all want the same thing - to be loved and appreciated.  We want to feel accepted exactly as who we are.  Each one of us is a locked gate, and the key to unlocking it and reaching freedom, is acceptance of each individual in all of our true colors.   

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 Terrible Two's At Age 6 1/2?

I remember reading a few weeks ago about Autism Speaks having a live chat with Dr. Temple Grandin.  Someone had asked her a question about communication and she shared that when she was a young child, she knew what she wanted to say in her mind.  She even had the exact words that she wanted to say, but couldn't physically get them out of her mouth.  Imagine how incredibly frustrating that would be.  I know that I would become angry if I were in that situation - wouldn't you? I have to wonder whether Jake is experiencing the same thing and is physically acting out of frustration.  Perhaps he is acting out to get some sort of sense of control?

I also have read (I can't remember which autism related book it was now) that "whenever in doubt, presume intelligence."  This means to always give your child the benefit of the doubt that he/she understands what's going on and what we are saying.  This is also why it's so important to not speak about your child and autism issues within his presence, as if he is not there.  This is something that Alex and I are consciously working on and we'll catch one another if we do this.  This brings me to the point that I had found myself in yesterday afternoon, after picking Jake up from his new summer program:

I am frustrated.   I am frustrated and tired.   I am tired of being frustrated.  I am frustrated and tired of going through the autism roller coaster of cyclical behaviors.  Right now Jake is into hitting and kicking and that's been going on for several months now.  It's completely ironic that my mild-mannered, sweet loving and gentle son is expressing his frustrations through hitting and kicking - but nonetheless, here we are.

It feels like some sort of developmental milestone.  It's like going through the "terrible two's," but we are six and a half years old, and weigh about 60 pounds.  In fact, it's Alex's theory that since Jake is developmentally delayed, that he's actually going through his "terrible two's" now; close to the age of seven.  Could this actually be a plausible theory?  It does make total sense to me.  The frustration that he's exhibiting, probably due to his speech delay/lack of speech, and not being able to quickly express his needs and thoughts verbally, is causing him to act out physically.  It also feels like an impulsive response to anything displeasing to him.

It is not easy to watch for me, and it is also the kind of behavior that doesn't get defused overnight; we've been dealing with this for several months now.  At first, it was just mostly during ABA therapy, but now that he started a summer camp program, these behaviors manifested themselves right away. Once again, I am frustrated that I don't have the right answers and I don't know what to do.  So here I am, frustrated on many levels - including being frustrated for him, on his behalf, that he's not able to express himself in a socially acceptable way right now.

I am worried that this behavior is not getting defused quickly enough and may be becoming his new norm for the time being.  I worry that if this doesn't get defused soon, that he may get kicked out of his summer program.  This is stressful for me because it means that the program failed to address this correctly, and it also means that I have less time to get things done at home, and have some time to myself.

My plan of attack is to come and be there with him during his program, observe his behavior and also see if my presence brings him some comfort.  Maybe this would help him settle in more easily to his new environment.  We will also have our BCBA (Board Certified Behavior Analyst - who works weekly with ABA therapy with Jake) come and discreetly observe him and see if he can give me and the teachers some feedback.


Now for some of the positive things that happened this week
1 - Jake started saying "Mommy" at the beginnings of his requests, and not just asking for things without calling me anything.
2 - When we were playing around he looked at me with a loving smile and said "I love you" all on his own.  This was non-prompted, which opened up the flood gates to at least ten more I love you's from him.
3 - He is now able to read 5-6 sight words in a row, when last week it was challenging for him.


Closing thoughts
There is definitely some growing that is taking place right now.  We tend to observe it with Jake in spurts and it's consistent with a pattern of two steps forward - one step back.  There are always back steps in his growing and learning process, but he keeps on consistently moving forward and developing in this type of progression.  While some things, like the undesired behaviors of kicking and hitting, are not pleasant and take a lot of persistence and work to defuse, other things, such as the positives that I reference above, are incredibly encouraging.  They bring me hope of what is still yet to come from this beautiful son of mine.  I am so thankful for those moments that take our breath away.  These moments are those times in our lives which inspire us to keep keeping on.  These moments inspire me to keep loving as much as humanly possible and to stay the course, one step at a time.

Autism Mom – Finding A Balance

As parents who work to facilitate learning/therapies for our kids who live with autism, we tend to put ourselves last.  I am no exception to this, and I fight the struggle of achieving a balance of priorities in my life regularly.  After all, getting through the day in our sort of household is about prioritizing, right?  I have come to realize over the years that what it really takes for me to feel happy is to have a state of balance in my life. 

When you are a family that is at the beginning of your autism journey, right after you receive the autism diagnosis, you basically just go on “survival mode.”  You do what you can as you prioritize the needs of your child.  As time passes and you sort of get into the swing of things: managing the household while facilitating schooling, therapies and appointments, you realize that hey, if I don’t take a time out to take care of myself, I will eventually get sick or simply burn out of doing the daily grind.   The problem is that we don’t have time to get sick and burn out, but our immune system is at higher risk when we are stressed.  More often than not, our kids get sick, it circulates to everyone in the house, and by the time it reaches us, we don’t have time to rest because we are taking care of one or more little ones who don’t feel well.  We have to stay healthy and well to manage the load, and it is always much more stressful when someone gets sick.  I am guilty of having said "I just don't have time to take care of myself," but what I was really feeling was more like: I just don't have the energy to take care of myself while dealing with a full load.  The only thing left to do to combat this dilemma, was to reshuffle my priorities and not forget to add myself onto the list this time.  In fact, why not just make a new list altogether?  So here we go:

My 7 personal must - haves for achieving a sense of well - being and balance

1.  Getting good sleep and proper rest

2.  Nurturing my marriage, family relationships and friendships

3.  Daily/weekly physical activity - Going for walks, being in the sun, breathing fresh air, stretching

4.  Seeking counseling support services when necessary

5.  Staying plugged in to my autism support group/networks – seeking and providing support

6.  Taking vitamins and necessary medications daily

7.  Staying connected to my creative/spiritual outlets – personal development and achieving  self-fulfillment from the things I love to do.

These “must haves” for me, are things that I have found along my way in my personal journey of being a mother who juggles: parenting a child on the autism spectrum, twins, military lifestyle, with a need for a creative outlet.  These are things that I have found that I cannot give up or live without.  I share these to provide support to others who may be dealing with something similar, in finding your own sense of balance, as you progress in your personal and family journey.  

So take that time out for yourself weekly, and daily and do something that brings happiness to you every single day.  If you wait for some point in the future to do this, you may realize that you’ve spent days carrying on and not having done anything for yourself that makes you happy – how fair is this to our kids?  I see this as equally important to doing everything else on the priority list.  It took me some time to finally get to this point where I am making this a priority.   It takes effort every day to keep it on my conscious and I am much more happy and fulfilled now.  I have found my balance and will continue to work on keeping it daily.  I will close off and wish you happy trails in finding your personal balance and share one of my favorite quotes: “When Mama’s not happy, ain’t nobody happy.”   

To new beginnings!

Walking On All The Keys

Miriam at the McWane Science Center

This past January, my parents were in town from Seattle for a two week visit.  It had been half a year since we last saw each other and we had a wonderful time together.  I always enjoy seeing my parents interact with the kids as they become increasingly more talkative.  We decided to go on an excursion to the McWane Science Center in Birmingham, Alabama.  It is about an hour and a half drive from Montgomery, and we were able to do something new, especially kid friendly, and simultaneously get the folks out for some new Alabama sights.  

Down town Birmingham, Alabama - On the way to the science center

We did this on a Sunday following a difficult week of Miriam and Jake waking up at night, upon our return from our big trip to the east coast.  We were tired and looking forward to getting back to the "normal" swing of things.  We realized that even though we were wiped, it would have been almost just as tiring to stay at home with the kids all day, as it would be to actively be out on some little adventure with them.   We do try to balance this out so that we are not always stuck at home, getting through the day with mostly indoor activities.

Jake pondering his future career as a scientist - or maybe he's just having fun

Jake and Miriam discussing future science experiments

As it turned out, we had a great time.  We did however have to actively chase the kids around.  At various points Jake had me running behind him from activity to activity.  I'm pretty sure that when he started speed walking, which turned into running faster and faster away from me, that what he really wanted was to be left alone to his own devices.  He wanted to explore the museum on his own terms - like that was ever going to happen.  Our plan of action was to have one adult be responsible for each child, and even though we were at an "advantage" with a ratio of four adults to three kids, they had us hustling all over the place.  Let's face it, as far as public scenarios go, a special needs child adds up to at least 2, and not 1.  So really, we were four to four and their team was winning.  At various points, we were widely spread out at different stations with the kids, checking in with each other from time to time via texting.  Good thing for modern technology!  It wasn't the ideal situation, but that's the way it typically is in children's museum type of settings for us - we made it work.  Jake was extremely interested in many of the areas and activities in the museum.  Some of his favorites were the water play area, the lit up science tubes, and the Wilfred the dog play areas with the sand castle bathtub.

It wasn't easy to get Max away from the restaurant play area

We decided from the get-go to get a year's family membership, which would pay for itself in just two visits and had us committed to coming back.  We also received a military discount, which is always very appreciated.   If you should ever be in the area, we highly recommend this museum.  If you do have a child on the autism spectrum, it can create a bit of a sensory overload.  You may need to later balance this out with lots of quiet down time.  For us, it was still very much worth the aftermath, and luckily, there were no consequential meltdowns.  The key, is to not overstay past the point of no return for the special needs child.  Once you start seeing signs of maxing out from your kiddo, it's a good idea to not over do it, and just call it a day.

Jake catching a break from all the action

With the ups and downs of family life with special needs, we don't always play all of the right keys.  In the science center though, we can figure out the right notes by walking on the keys in our very own sound experiment.  During our childhood, we are all little explorers and little artists.  The take away here, is not to lose that childish naivete and fascination with the hows and the whys that children love to ask.  By keeping that creative spark alive when finding something mysterious and new, we find ourselves experiencing the kind of wonderment that only a wide-eyed child can posses in it's truest organic form.  And that, my friends, is science!

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

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