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.

Brotherly Love

Ever since Jake got his autism diagnosis, at the age of two and a half, we had always hoped that he would eventually be able to interact with his siblings and friends.  All we've seen along the way however, is parallel play, where kids play next to one another, but not together as in taking turns.  The parallel play is more common of younger children's behavior.  It's also a very prominent autistic behavior, where children are more comfortable playing on their own - not having to take part in a dialogue, or go out of their comfort zone.

Every once in a while, I would ask his teachers whether or not he's been interacting with his peers.  The answer has usually been that he's still parallel playing next to other kids.  I was of course thankful that he at least doesn't go off on his own in a corner and isolate himself completely.  Inside, there was always a part of me that hurt after hearing the term parallel play.  The parallel play continued over the months and through the precious early childhood years.  I subconsciously must have tried to not attach an emotion to that feeling of not yet-ness.  Over time,  it turned into an understanding that he's just not ready for it yet.  I had just lowered my expectation and became eventually completely okay with it.  I had accepted it and I felt that it was going to be okay no matter what because I love him. 

During his ABA therapy sessions I had requested our therapist to reserve some time to have Jake have some social time and play with his siblings, presenting a natural situation that would enable him to learn how to interact with other children.  His interactions would then be highly reinforced by praise, high fives, tickles and his preferred activities, if he had typical play-like of taking turns and interactions with his siblings.  He didn't seem to have much interaction with Max, but was slightly more interactive with Miriam.  Over the months and the couple of years that we had incorporated this into his therapy, not much had changed and not much progress was made.  He typically had a difficult time tolerating this part of the therapy.  It made sense, since interacting with others is not natural to kids living with autism.  Any new thing taught in therapy had to be tolerated and repeated for so long until it was eventually not so new anymore.

Last week, during our long ten hour road trip home from an autism family summer camp, something wonderful happened.  Our youngest, Max, was so bored that he started tickling and demanding attention from Jake.  Jake didn't actually mind it and played along with Max for a very long time.  Other than some DVDs that we had on and off throughout the trip, this was the main activity for the boys.  This was the very first time that we had ever seen the boys playing together, and we were delighted to be witnessing this very special first.  I had hoped that it would be the start of many many more such situations of the boys playing together.  Typically, the twins would play together and Jake would do his own thing.  This week, during several evenings, Max would instigate rough housing and tickling with Jake and they would bounce on the yoga ball together and giggle; simply, music to my ears.

It is interesting that once we accept everything about autism and special needs and we are fully okay with where our child is in his or her journey, that the unexpected can happen.  Sometimes, when we are so anxious, and we're working so hard to make it to every single therapy session, present the right kind of situations for our child for proper special needs learning to take place, set up hopeful play dates, and try to be the best possible parents that we can be, that there is almost too much pressure placed on our child, as well as ourselves.  After all, we are learning the ropes as we go half of the time.  We are not well rested most of the time, and we juggle a ton of things simultaneously.  What I'm trying to say here, is not to give up hope.  Don't feel defeated when a situation doesn't turn out like we planned or hoped.  Our children bloom and blossom at their individual pace.  Certain things, like the brotherly bonding that I had shared here, will happen in due time; it happened in a very natural non pressured way, when we had least anticipated it.  Here's a shout out of encouragement to anyone who's facing these type of scenarios and challenges.  Hang in there, and keep putting your loving heart out there.  Even if our kids don't seem to respond to it now, in an obvious way, they know that we love them deeply.  For them, that is the most important type of connection and learning.  As we plant our seeds in our family garden now, who knows the potential of what is still yet to bloom?

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.

Why Autism Families Can Benefit From Blogging

With April being the international month of Autism Awareness, I am sharing about one of the biggest passions of my life.  Taking it a step further, I explore why autism families can benefit from blogging, and consequently, raise autism awareness in such a fantastic way!  Blogging about family life with autism is a great way to reach out to more than one person at a time, and take awareness to a broader platform.  Other families can benefit from shared experiences, knowledge, resources and support provided or needed by the writer.  This resource wasn't available during the previous generation that coped with autism.  Since autism is a fairly newish field, we are learning about it as we live it.  Our recollections and experiences are crucial to research and to getting to the next stage of finding out more about causality as well as a potential cure.  Imagine if parents thirty years ago had access to insights that the Internet provided back then, just how much farther along we may be as a community.  If you are a member of a family that is coping with autism, I bet you have a lot to say.  You may not even realize just how much you do, until you start writing it down.  If your family copes with autism, you've got a story to tell, and if you write about what you are passionate about, you can't go wrong! 

9 Reasons for autism families to start blogging

1.  Raise awareness  

This is the number one reason that I started a blog.  By blogging about your family life with autism, you are raising autism awareness in a very personal and meaningful way.  When we Light it Up Blue on April 2nd, we honor our loved ones that live with autism.  Part of raising awareness however, is also shedding a light on how autism affects the whole family.  Therefore, in events such as Walks For Autism, we empower families, and not only individuals.  It is important not only to raise awareness for those who don't know much about autism, but also to encourage families with very young children, to get early diagnosis and early childhood intervention.  Studies have shown that doing so is key to a higher quality of life for the child later on.  By tapping especially into the early childhood years of ages 3-5, you are catching a key developmental time in your child's developmental potential.  We now have the ability to catch signs of autism from extremely early on, where a generation ago, this was not the case.  If we can help families that are not aware of this, ain't that something grand! 

2.  Provide support to other families

When a family first starts out on their journey on the autism spectrum, the first thing that they want and need is SUPPORT!  Receiving support is the greatest gift of all.  By providing support, even though you may need it yourself, you will experience a wonderful type of healing that transpires within this process.  The kind of support that I continually look and long for, has not been easy for me to find, so I try to offer it to others.  No one can do this on their own and keep a healthy mindset.  That old saying, "It takes a village to raise a child," well, that's exactly spot on.

After receiving Jake's autism diagnosis in '09, the progression of events went something like this for us:  You are shocked, sad, angry, helpless and frustrated.  You blame yourself, perhaps that somehow, it may be your fault.  You think of dreams that you have for your child - all the could have beens, and your spirit is crushed.  You may be in denial that, maybe your kid was misdiagnosed, or that he can grow out of it in a few years, and you may also be numb of emotions.  You are physically and emotionally drained.  You want to move forward at some point, but are totally overwhelmed.  

Suddenly, you have to cram study a new language called Autism, so that you could better understand your child and provide him what he needs.  You want to do right by your baby and provide the very best possible, but you realize that since you know close to zero about what is taking place, that you feel like a child, yourself.  Your parents did not prepare you for this - no one did.  You don't know how to move forward.  You lay awake for nights on end, tossing and turning, at best.  You have to learn about all of the therapy options, schools and resources out there, make appointments and get on waiting lists.  But mostly, you feel alone.  You worry about having a stigma put on your child, about people looking at him differently, and talking about him in insensitive ways.  You worry about bullying.  The worries are endless.  Once you get through this initial part of the journey, and things start to sink in, you realize all that needs to happen immediately.  You try to get your senses back to normal, to get your bearings.  However, life as we know it, is no longer on "Plan A," and there is no more "normal."  Instead, a new "normal" is about to take place, as you brace yourself for the ride of your life.  

Since the start of our journey, I joined a meet up support group back in San Antonio, made friends with other autism families, and sought counseling by an experienced autism support counselor.  I took an autism resource class and Alex took a fantastic advocacy class.  We went on yearly Walks For Autism, which was the first time that we felt empowered by hundreds of people that came to support their loved ones as a community.  If your family has gone through this ordeal, you are absolutely the best source of support to other families, because you know exactly what it means, and you simply get it.

A couple of years into this process, I founded my own autism online closed Facebook support group, Puzzle Pieces.  I initially started this out, because I needed a support group to be mobile with me throughout our family's military moves.  We share research articles, inspirational visuals, therapy resources, updates on how our kids are doing with therapies, and provide confidential support.  I also founded a meet up sister group locally, Puzzle Pieces - Autism Support in Montgomery, AL.  If you are affected by autism and would like to join the online group/s, you can contact me.  https://www.facebook.com/groups/129900443760015/  

 

 3.  Receive support

By blogging about autism, you will receive support from others in the autism and special needs community, as well as friends, new friends that you will meet along the way, and readers who may or may not have any background in autism.  By blogging, you reach out with your words, and these words have power.  You are putting your energy - your karma out there.  This energy will come back to you threefold, get started and watch it happen!  

Don't shut out people that don't have a special needs family.  Moreover, don't fall into the mindset of it's me and my child against the world, or me and my family against the world, inadvertently, isolating yourself.  This is a dangerous predicament to find yourself in, as it can lead to depression and loss of hope.  Also, how can we raise autism awareness if we only surround ourselves with autism/special needs families?  

Sometimes support comes in unexpected ways.  It is those families that don't cope with special needs, that can often be that source of this support, because they have the ability to do so.  They can be there for you, simply because they don't have your family scenario, and therefore, have more energy, or the capability to help you out.  DON'T PASS IT UP because you don't want to seem needy or feel uncomfortable receiving help.  Give yourself that well deserved break that you know you need.  Be open to different kinds of friendships and support, because you will want a balance, and as my husband Alex says, "you can't breath autism 24/7."  It also gives you an important opportunity to recharge yourself for your family, and isn't that priceless?

Matching magnets to text - activity taught in Jake's autism class

4.  Prevent bullying

By promoting awareness and acceptance, we consequently stand up to bullying.  Bullying is a major worry for parents of kids on the spectrum.  The more severely autistic a child is, the more chances there are for this child to be bullied because he/she sticks out in a crowd.  Statistics are varied on this, but range from 46% to an astonishing 90% of kids on the spectrum who will get bullied at some point, and that it's more common in public school settings.  These are startling statistics!  Imagine our kids that don't have the ability to speak.  How are they going to let us know if they are being bullied, other then by showing us a different behavior such as crying, or acting out?  We would have to do the math, and figure it out on our own.  By raising awareness, we speak out to other parents about instilling principles of kindness and acceptance of others' differences.  If children are to be raised to value differences and treat others kindly, they are less likely to bully others. 

5.  Stress relief

Blog for a personal outlet, therapy and stress release.  This is a different sort of outlet that you can not get from having a conversation with someone else.  Let's face it, we can all use some therapy every once in a while.  Why not proactively get it on a regular basis, by writing down our thoughts?  Some people, of course, already do so by keeping a personal journal.  This is different, in the sense that it is not private, so you will decide if it is the right outlet for you.  You may decide that you want or need to do both, as you probably wouldn't disclose the most personal details of your written journal in your blog.

6. Tracking developmental milestones  

This is a great way to keep track of therapy goals, interesting things that happen or get said.  This is a wonderful and handy way to record special moments that you want to save and share with others.   Just the other week, I wrote a post called Book on the Roof about a week that my husband was out of town, and the funny and ridiculous things that happened on the first day.  I'm glad that I wrote it down, because I know that the little details of that day would eventually fade from my memory and be forgotten.  I know that other families were able to relate to that post, and by writing about it, it also provided support and encouragement to other families, as well as some comic relief for me.

7.  Inspiration 

You never know how inspirational reading someone's story can be to someone who needs a smile or some hope on that day that you posted.  Words can have a powerful impact, and readers can take a multitude of messages from your words.  Be yourself and keep it real - don't try to be something or someone that you are not.  Sincerity is always best, and this way, you are sharing your own unique beautiful and personal voice.  

8.  Strengthening Family Relationships
In our family, we have experienced couple blogging.  I started blogging first, and within a short period, Alex started his own blog as well: Capt Dad - Family Life With Autism, Twins and the Military http://alexjrose.blogspot.com/ and what a great thing it has been! Our individual recollections have consolidated into a family effort of raising awareness and extending a hand of friendship and support to other families.  Doing this simultaneously, individually, and also as a team, has strengthened our partnership, our resolve, and in our moving forward as a family. 

9.  Connecting the puzzle pieces 

By raising awareness, providing and getting support, talking with others about autism, and promoting acceptance, you are personally filling in the missing puzzle pieces of that larger global puzzle.  By making these connections with our efforts, we are actively completing this picture.  Since there is no cure for autism yet, we are providing the only cure that we currently can, by connecting the pieces and being there for one another.  There is power in numbers!  Your blog will receive views from countries all over the world, as you make a difference on a larger platform.  It only takes one person to make a difference, because that one person can influence others; it's a domino effect.

Jake at age 6 1/2  - Occupational Therapy 2013

How to get started

Have you thought of the title of your blog yet?  I suggest something memorable that summarizes who you and/or your family is in one sentence or phrase.  Maybe even a phrase that your child loves to say.  Think of something meaningful to you that captures your/your family's essence.  I started my blog on Blogspot through Google.  If you go this rout, set up a Google profile, including a photo, a self description, your interests, and what you write about.  Set your privacy setting accordingly on your profile - following the steps is user friendly.  Once you are all set up, it's pretty much like writing a word document: do a spell check, have someone do an edit read through for you if you like, and press Publish when you are done. 

Privacy Settings

You will want to have personal guidelines and limitations of what you are going or not going to disclose.  Things to avoid disclosing are: specific personal details such as dates of birth, financial information, or anything that could lead to identity theft.  Avoid disclosing any extremely personal information and anything that would lead to an invasion of privacy of your partnership.  Refrain from anything that may offend some of your readers.  If you know that family reads your posts, then do not write things that can hurt anyone's feelings - use your judgment and discretion, of course.  Basically, be mindful that this is an open resource to all readers, unless you set your blog to be viewed selectively.  Keep in mind that if you do so, you will not get as many views.

Community Blogs

Once you get your blog going, you can request to link your blog to other sites, such as the family blogging on Autism Speaks.  If you happen to be a military family, you can link your blog to AMFAS (American Military Family Autism Support - http://blog.amfas.org), MSNN (Military Special Needs Network) and Milblogging.com (Military blogs).  This will give you additional views, as well as being part of these blogging communities.  There are many other sites out there that you can research and join.  You can also share posts on Facebook, that way, friends can view your posts conveniently when they are online.  If you set your post setting to Public, you will receive more views.  On my blog, I added a Note to Reader, asking readers to share posts that they find meaningful, helping us raise autism awareness in this way.  These are just some additional ideas to consider, as you move forward in your blogging journey.  

Montgomery Museum of Fine Art

The Rest?

The rest is what I think of as an open canvas with a multitude of dimensions and limitless possibilities.  I hope that you enjoy and find much fulfillment from blogging about autism.  It can be a life-changing experience.  If you would like to get started but need some encouragement or moral support, feel free to give me a shout in my comment section below.  Who's ready to give it a go?   

To new beginnings!

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.

 

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