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:

Thanksgiving - Reflections Over Bread Crumbs

It has been quite a few months since I had written my last post.  After a time of introspection and just living the day to day, I have been feeling the urge to start writing again.  To backtrack, my last post was about the beginning of the summer and my son Jake's difficulty with adjusting to his summer program.  After trying out the program for about a month, we had decided that although it was a program for special needs, it did not suit the needs for our kiddo.  It did not provide enough structure for him, which he really needs.  Even though at the time I was incredibly frustrated by the situation, we got to the point where we just chalked it off to: well, at least we tried.  That experience taught me that just because a place has a good reputation and may look good on paper, it may not be the right place for every child.  It felt like we were desperately trying to fit a square peg into a round hole, and it was time to move on.  So we did.  We got through the rest of the summer.  

Camp ASCCA at Lake Martin, AL - an evening boat ride

Although it wasn't the experience that we were hoping for, there were however a couple of highlights for our family that summer.  We went to two special needs camps: Camp ASCCA (Alabama Special Camp for Children and Adults) in June and Camp Yofi at Ramah Darom in August.  Camp ASCCA was our second summer and Yofi was our first time.  ASCCA includes all special needs children and young adults and Yofi is a Jewish camp that holds a week long program especially for autism families.  We loved both camps, as they each offered different types of services and activities as well as very special counselors who put their heart and soul into our kids.   

Art activity

Easter Seals provided a free special week for military families!

Through the journey of putting ourselves out there by stepping outside our daily comfort zones of predictable routine-filled structure, with trying out special needs camps and providing fun new family experiences, we knew that we had found a home away from home at Yofi.  We had a lot in common with other families there and made some new friends.  Because there was respite provided for the parents, we basically got date nights with other parents every night.  There were creative social activities planned for parents after kids went to sleep.  The camp also set up special precautions to help our families during that week, and we felt like it surpassed our expectations.  One such precaution (or baby proofing, as we lightheartedly call it) was at the evening of the bonfire, the counselors stood shoulder length apart at the edge of the lake, so that kids couldn't make a run for the water.  Given that autistic kids are very attracted to water, we were very much appreciative of that.  Each autistic child was partnered with a friend (a personal counselor who took the child on group activities without parents and siblings and attended to his/her every need).  The siblings had their own designated group activities that parents would drop them off at.  Parents had their choices of assorted activities, and they could also choose to rest if they'd like.  This aspect of the camp made it feel like we were (dare I say) on a vacation on a resort and pretty much appealed to every aspect of family life with special needs.  We had never experienced this before.  

One of Jake's favorite activities at Yofi

There were of course family activities scheduled for us to do together as well.  One of my personal highlights were the yoga sessions at a pretty little spot by the lake.  I had one private session on a rainy afternoon and the sound of the drops gently splashing on the water was incredibly serene and dreamy.  The other session I did with Jake, where we did lots of interactive posses and movements, and I was delighted to see him get involved and be in motion and relaxed altogether.  A new friend was there with her twin boys and we enjoyed experiencing that session together.  

Jake's counselor carried activity cards on a key chain for Jake

Another cool thing that the camp did was set up the cafeteria to have the main sitting/eating area in the middle and two play rooms, one on each side for younger and older kids.  Counselors sat outside the room with an attendance board for checking in and out, so that all kids were accounted for at all times.  This enabled parents to complete their meals and continue shmoozing with other parents and counselors in a relaxed atmosphere.  This was something which we thought was absolutely brilliant.  I could go on and on singing praises here, but I think you get the picture.  It was a wonderful experience for our family.  Subsequently, our twins repeatedly asked if we could return the following summer and kept talking about our camp adventures for weeks after we returned home.

Every child at Yofi got some sort of plate award

So that was the rest of our summer - it ended on a very positive note.  Alex and I felt very encouraged and proud of our little family for getting out there, taking charge and making memories with our children.  We felt fortunate to find such types of summer programs for special needs families and we want to encourage other families that may be gun shy to take such a step.  A lot of it is hands on and exhausting, especially in the heat of summer with outdoor activities, but staying at home all summer and finding daily activities, can be just as difficult at times.  It's also a great way to get kids more adjusted to being away from home in a fun and safe environment.  Basically, we got hooked and look forward to coming back in future summers.   



In closure, what I'm thankful for this year is that we had paved a new path with little bread crumbs (mind the turkey stuffing analogy) for us to come back to and find.  They lead the way for us, inviting us to return, with each step forward, getting closer and closer to warm familiar surroundings and friendly faces.  And as we look back over our shoulders, the crumbs slowly fade and disappear.  We then intuitively throw out fresh new crumbs, paving a fresh new path for us to return to for the following year.  I guess I am mostly appreciative of taking a leap of faith, putting our good energy out there, and seeing what happens.


Happy Thanksgiving, 
and may your bread crumbs pave the way to a lovely holiday and happy home!
 

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!

A Cure for Autism? Thoughts and Reflections

There are some strong feelings circulating in the autism community about the idea of a cure, or a recovery, in regards to autism.  While this is a tricky subject to discuss for various reasons and opinions, I often think about the idea of a cure and what the future may bring.  Where does my own comfort level fall within this spectrum? What do I think about a potential cure for autism within the near future? Where do I envision our society heading in this collective journey, in what is still largely a mystery?

I have read many times about parents being offended at the idea that their child would even need a cure, when he or she is not sick.  After all, autism is a neurological disorder, and not a disease like cancer, heart disease or diabetes.   I completely understand and can relate to these sentiments.  There are parents who feel that autism is as much a part of their child’s personality, as their hair and eye color is a permanent physical attribute that a child possesses; this being a part of their core make up.  Utilizing a cure (if it were even possible) would then imply that we are going to and/or want to change our child’s personality.  In that sense, it is a difficult concept to break down and process.  This would also present other challenging questions such as: if a child is more severely autistic, does autism make up a larger part of his or her personality?  This makes the issue of a cure even more difficult to take in.  I am one of those parents who believe that autism is a big part of who my child is.   It doesn’t define who he is, but it does play a large part in how he perceives the world, and every interaction that he experiences.   

Alex and I believe in teaching skills through therapies (specifically ABA therapy and then to a slightly lesser degree, speech and occupational therapies) that break down learning into smaller steps with lots of repetition on a daily basis.  We have many friends who take various approaches to treatment that work for their child and their family.  We are not seeking to impose our view of therapy on anyone – we are simply sharing what works for us.  We also stay open to the idea that at some point in the future, there could be a cure to some or many symptoms associated with autism.   This would possibly help with anxiety during transitions from activities and helping the ability to better focus during certain activities.   We already know that there are medications out there that help reduce anxiety.  We know of Ritalin, which helps those coping with ADD/ADHD focus more easily. Similarly, we also know that in autism there are parts of the brain that don’t send signals as effectively to each other, causing a weakness in responding to certain social situations.  What if in the future a treatment were to be found to help with those connections in the brain in autistic individuals?  While it is not possible now, if a scientifically recognized and accepted treatment became available in the future, we would not be closed off to it.   

Jake's class - reading activity

For me, the idea of a cure is not a cure in the sense that one would have a single or even several treatments and be “cured” or “recovered” of autism.  I think of the idea of a possible cure in which a treatment would help with certain symptoms of autism, but not wiping out the autistic traits.  There are parents out there who report that their child was autistic and has recovered from autism.  There are kids out there who eventually lose their autism diagnosis.  It is hard to know what to think about such scenarios, as every individual with autism is so different.  From the reading and research that I have done over the past few years about the subject, I have come to believe that although someone can make huge strides in therapy, there will always be natural autistic tendencies in a person, and while he or she may “blend in” to the rest of society, they will have to fight natural autistic tendencies as they cope through the use of tools and skills acquired along the way in order to fit in.  Depending on the severity of autism in that individual, it may be a harder or easier task to do so.

I keep a realistic approach to what we need to be focusing on now as far as teaching functional social and academic skill building, and I don’t have a false sense of hope for a potential cure.  I do however think that with more awareness about autism, as more kids get diagnosed and plugged into therapies, and funding for autism research continues to grow, it is not far fetched to think that medically treating various symptoms of autism can be attained during our lifetime.   

The Sensory Room at Jake's school - the Autism class spends time there during the day

Another aspect of a cure that is also valuable to me is the idea of a healing taking place in our society.   I envision parents continuing to make connections with other parents in autism families, providing support to one another, and promoting a sense of well being and supportive atmosphere as we lift each others spirits. 

I discuss in other posts how autism affects the entire family and how parents have to keep it together daily.  The stress that this produces can sometimes be debilitating on parents emotionally, on a personal level and in a relationship context with one another; not to mention the affect it also has on siblings.  While many of us focus on the daily tasks to maximize learning while keeping our eyes out for a potential cure, we shouldn’t forget about being supportive to one another in the present.  Let’s help keep each other going and moving forward in this journey as a community. 

Meanwhile, we will do what we can to facilitate learning and setting our children up to lead a life that is as fulfilling and as independent as possible.  In the case that we don’t find a scientifically proven cure, we will always know that we did what we could to safely provide the very best for our children as they move forward in their own journey, with the tools, skills, support and love that they’ve been provided with all along the way.

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Creativity with Autism, Twins and Military Adventures 

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