Getting Back Into Focus

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

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

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

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

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

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

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

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

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

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

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

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

Things That Make A House A Home

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

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

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

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

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

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

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

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:

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!