Getting Back Into Focus

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

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

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

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

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

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

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

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

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

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

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

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

Things That Make A House A Home

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

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

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

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

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

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

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

The Sound of Quality Time

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

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

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

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

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

On a beautiful sunny day at MANE

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

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

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

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

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

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

The twins playing in a toy house

Jake at an occupational therapy session 2014

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

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

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

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

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

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

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

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

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

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

I can hear the bells of time ringing now, 

calling us to find our passions once again;

it is the sound of quality time.

Walking On All The Keys

Miriam at the McWane Science Center

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

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

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

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

Jake and Miriam discussing future science experiments

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

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

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

Jake catching a break from all the action

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

Visit my blog:  

Lily and the Roses ~ 

Creativity with Autism, Twins and Military Adventures 

http://lilybrose1948.blogspot.com

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

Visit my other blog: 

Creationlily.blogspot.com 

Where I display 

my artwork, music compositions and travel photos 

Stop by and share posts with your friends

Creationlily

Sleeping In - The Double Edged Sword

Every weekend I find myself in a similar conundrum of needing to sleep in, being fully aware of the pros and cons of such a cyclical outcome.   The result that I hope to attain from catching up on much needed rest, typically does not match my unrealistic expectation.  I am fully aware that this is a naive notion, where I will not end up feeling well rested.  Sleeping in for only one morning just messes with my sleep cycle, actually causing me to feel like I could have used some more rest.  It doesn't leave me refreshed and invigorated as I would have ideally liked.  This proposition is much like Einstein's take on insanity: "Insanity is doing the same thing over and over and expecting a different result."

This is the opposite of what I've been taught over the years, about how consistency is so important, when one dabbles in a skill based endeavor.  Things that are skill based, such as learning a musical instrument, (for me it was piano) need lots of repetition.  It is only with lots of repetition and committed practice, that we can advance and progress; thus doing the same thing over and over, and expecting a different result.  Perhaps it is with this exact insane type of mindset which we need to be in, in order to be fully committed to our skill based endeavor.  The difference between Einstein's insight and learning an instrument, is that Einstein is speaking in a very literal way about exact repetition.  Even though we cycle through lots of repetitions when we practice, it is an additive process.  We don't repeat the exact same thing indefinitely.  In a gradual progression, we add more music to the repetitions and over time, move on to newer material.  Only in this way, can we really expect to see progress.  If our practice is approached in the correct manner, then expecting results is definitely attainable, and not at all crazy.  Now pursuing a career as a musician, is a whole other ball of wax.  Lump on military changes of station on top of that, and it's a whole other ball game - but this is better left for some future post.  So far, I have been fortunate to find some work in music, with all that we have going on.

Max and Miriam finding new uses for laundry baskets at home

 
Our regular routine during the week is getting up with the kids around 6:00AM.  Alex will either get ready for work or get up extra early for a pre - work workout.  On the weekends, I sleep in one day, and Alex sleeps in the other day.  The problem is that the sleeping in until 8-9AM typically leaves me wired that same night, and it's hard for me to fall asleep.  The very next morning it's my turn to get the kids ready around 6:00AM again, when I'm most likely feeling less then human.  Since I get the opportunity to have that one day a week to rest, I instinctively feel that I should take it.  On the other hand, I am getting to the point where that one day a week thing is more than what it's cracked up to be.   Moving forward, I will try to rest, but not sleep much longer than usual.  Hopefully, this will help with the weekly sleep cycle.   I recall having read an article or two about achieving optimal results by sticking to a similar sleep schedule daily.  I see the merit of this now.

I bet that we all have friends that can tell their kids to stay in their room and play until mom and dad are ready to get up.  I can't even imagine having that scenario in our home; all the disasters that could take place during that unattended time...  Unfortunately, it's not typically a likely reality for families that live with special needs, with very young children, or with both.  Alex thinks that it could happen in the next few years -  but for now, I'm not holding my breath.  What I do know, is that we have to actively continue to make it work - it, being our life with all of it's connective elements.  It's crucial to get rest on a regular basis, so that we can manage the house, the kids and their therapies (I will post about the twins returning to speech therapy later on), while we enjoy as much of it as we can.  We'll go out on occasional date nights, as well as some fun outings with the kids on the weekends, finding little opportunities for special quality time with each of the kids.  We are grateful for all that we have been blessed with, as we strive to learn more about parenting, autism, relationships, and ourselves.  Meanwhile, extending a hand of support to other families coping with autism, continues to be an active part of our life, on our minds, and close to our hearts.

We will continue to make beautiful music, marching to the beat of our own little drum.

Jake stealing the show - Summer 2011

Visit my blog:  

Lily and the Roses ~ 

Creativity with Autism, Twins and Military Adventures 

http://lilybrose1948.blogspot.com

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

Visit my other blog: 

Creationlily.blogspot.com 

Where I display 

my artwork, music compositions and travel photos 

Stop by and share posts with your friends

Creationlily

Wrapping It Up For The Holidays

As the end of the month of December nears, I find myself in a transition of sorts.  I had just gotten over being sick with a lingering cough for about six weeks.  Alex was away for the last week and a half on a case in Alaska.  We just had Hanukkah and Alex back home with us for the final day.  Lastly, the kids are getting through their last week of school before the winter holiday break.

During the time frame of the past two months, I started my first blog, Lily and the Roses ~ Creativity with Autism, Twins and Military Adventures (lilybrose1948.blogspot.com).  This is something that I had been thinking about doing for several years and finally sat down one day and just started writing.  I wish that I had started this back in 2008 during Alex's deployment to Iraq.  This would have been a wonderful outlet for me.  The reality at the time however, of being pregnant with our twins, enduring the deployment and signs of autism in our then two year old Jake, did not enable me to be clear minded, or have the wherewithal for such an undertaking.  As they say, timing is everything.  By the time that I started my first blog this year, it seemed that I had so much of what I wanted to say just flow right out of my head, through my fingers and onto the blog-canvas.  It seemed that my writing was going to have to play catch up to where my life is at this point right now.  This was going to become an interesting and very fulfilling journey for me.

Speaking of timing, it seemed that my life has been heading to a point where I needed to take our family's autism advocacy to a platform for raising more awareness, then just speaking to friends and people that I had met along the way.  That was all nice and dandy, but it wasn't going to get us very far with raising awareness on a bigger platform.  I was at a point where I felt that I had so much to share about our experience with autism and raising awareness.

That time for me began two months ago, with my first blog post: Who Pressed the Fast Forward Button (http://lilybrose1948.blogspot.com/2012/10/who-pressed-fast-forward-button.html).  Once I started writing, the posts just kept flowing, and it felt great to share so much of what I had been storing inside of my busy brain.  I had found a wonderful way to to raise awareness, by sharing about our family's experience; by sharing something personal.

Looking back, I realize how far we have come in our journey, since we had first received Jake's autism diagnosis in the summer of 2009.  There was a time that talking to family, friends and people I had just met, was almost unbearable for me to do, because it was so painful to talk about.  We spoke to our families first, and then to friends, and then we would just tell people with whom we felt comfortable.  Eventually, after going to so many therapy sessions with Jake, and talking to other parents who were sitting there and waiting for their kids, I got to a point where I would talk to anyone who was interested in talking about autism.  I really didn't care who I was speaking to - if they were willing to listen, I was going to talk about autism.  This was the start of the healing process for me.  The more I opened up about our family's experience, the better I felt.  It was incredibly empowering to release the shackles of what society would think about an a-typical family.  I didn't care anymore, and I had bigger fish to fry.  I was becoming my son's number one advocate.  He had my heart, and I became his voice.

I recently decided to start my second blog, Creationlily (Creationlily.blogspot.com) where I display my artwork, music compositions and travel photos.  I wanted to have a second blog to focus purely on creativity.  I would have that be separate from my life - blog, where I talk about autism, military life and our family.  Even though all the things that I write about in both blogs are connective aspects of my life, I wanted a purely creative blog to display my work, and to have that be my focus here.  In doing so, my thought was that it would provide further inspiration to be creative, through the process of sharing about creativity.  I published my first post on December 19th, The Inspiration for Creationlily (http://creationlily.blogspot.com/2012/12/the-inspiration-for-creationlily.html) and thus had begun the next chapter of my life.  Right before the start of the new year.


The experience of writing has been nice in other respects as well.  It has enabled me to reach out with my words and rekindling old connections as well as creating new ones.  We all effect and inspire one another.  I truly value and appreciate those people in my life, no matter how near or far, who encourage and support me on a personal level, with our autism path and military life.  With this, I close by wishing you all joy and peace in welcoming the new year.

 Happy holidays from our family to yours, 

 Lily and the Roses

 

Absence Makes the Heart Grow Fonder

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

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

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

 

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

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

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

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

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

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

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

some other little boy or girl's dad, 

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

Visit my blog:  

Lily and the Roses ~ 

Creativity with Autism, Twins and Military Adventures 

http://lilybrose1948.blogspot.com

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

Visit my other blog: 

Creationlily.blogspot.com 

This is where I display 

my artwork, music compositions and travel photos 

Stop by and share posts with your friends

Creationlily

Giving Thanks to the "A Team"

Don't Miss The Boat

Navigating through the autism spectrum takes one or two captains at the wheel of the boat and a few key team players to help make sure that the boat is in good condition and moving ahead through the calm and soaring seas.  I like to refer to this group of good people as: the “A Team.”  The most important people on the team are the parent/s – the captains, and they select the proper teammates to help guide our little explorer Jake, to reach his destination while being well equipped.  This team aside from its captains, includes teachers, the ABA team comprised of a BCBA (board certified behavior analyst) and an ABA tutor (ABA is applied behavioral analysis, the most common therapy that facilitates learning for individuals living with autism), speech and occupational therapists and equine therapy (horse assisted therapy) teammates.  As we change locations for military assignments every few years, the team members do change, but the mission is still the same: teaching survival skills for academic and social settings, with the motive of becoming an independent, fully functional individual in society who will be able to have a meaningful and fulfilling life.  As all teams need a cheering section of loyal fans, this one has the support of family, friends and an autism specific support group for the team captains.  The team captains alternate when necessary, but their job never ever stops.  Getting the right key players on board would make the difference in the type of learning and progress that goes on throughout the journey at hand and the team captains are in charge of making sure that the boat is always steering in the right direction. 

 

 

 Appealing To The Senses

A screen displays a candle for a calming affect

A glimpse through one of the boat's windows has left me reflective of this morning's events.  I visited Jake’s classroom today for a Thanksgiving lunch.  Even though it wasn't the easiest mornings because Jake thought that he was coming back home with me, I look back feeling thankful.  Jake’s teacher took us to the Sensory Room, where the kids spend time during various points in their day.  I took some photos of the room and could easily see how the kids would enjoy spending time in there, and how the room would have a calming effect.  The various stations that were set up left me feeling appreciative that the kids get to be somewhere that was so thoughtfully cared for by some of our teammates.  Stations were set up with tubs of clear plastic balls and glowing rubbery spaghetti strings in different sizes.  The photos here don't do the room justice, but you can form an impression from them anyway.

 

Getting With the Program

Jake goes to a public school kindergarten program that has an autism and speech pathology class combined as well as integration to the general education Kindergarten class.  On his IEP (individual education plan) we selected a certain percentage of integration to the general ed. Kindergarten, and this is different for every child that enrolls in the program, depending on their needs.  We decided to start low and overtime amp up the percentage, as Jake builds skills to tolerate being with his neuro-typically developed peers and learn in a typical classroom environment.  We want to make sure that he gets all the one-on-one teaching and assistance that he needs right now, so as he becomes more adapt to the classroom, he will be in the regular class room more.  Research has shown that the quicker a child integrates into the general ed, the more adapted he/she will be at adjusting to society and blending in. 

 

This is his first year at the program and we have seen some wonderful progress in just the few months that he’s attended.   He gets bussed to the school and is there from about 7:30am-3:30pm.  This is a very structured program that is so wonderful for kids that live with autism, and Jake really thrives on a tightly structured day.  His teacher and classroom aids work with him through a picture schedule, so that Jake can see what he’s expected to do at the moment as well as what is coming up next.  One of the biggest challenges for kids living with autism is transitions, and this is one of the things that help the most for alleviating anxiety about what is coming up next.  Since autistic kids are super visual learners, the picture schedule enables them to process the various stations of their day in a more tangible way.  Jake has also worked early on with a picture schedule while at his PPCD (public school program for children with disabilities) in San Antonio, since the age of 3.  We also used something similar at home in order to work on transitions in his day.  We no longer need to use this type of schedule at home, but it was helpful when we first started out on our path through the autism spectrum.

2 Steps Forward, 1 Step Back

Typical of Jake’s progress, it’s usually 2 steps forward and 1 step back.  We rejoice in the small successes, and the steps back can be a bit of a roller coaster, but since this is the “norm” we’ve sort of gotten adjusted to it.  It is hard to not get upset when it’s step back time and this can also be frustrating sometimes on the other members of our team, but we all know that this isn’t a sprint – it’s a lifelong marathon and a lifelong condition so really, learning doesn’t ever stop.  We mostly just try to keep in mind that even when he takes a step back, it’s still a part of the learning – you fall down and get up again and try it some more.   As long as he keeps making progress, that is really the most important thing, and we are there to support him through it all.  Sometimes it may take a bit of luck to run across teammates that are willing to go the extra mile, but I believe in karma, and putting good energy out there, and with it, that energy returns back to us – sometimes even more then we had anticipated.  So I give thanks to all the teammates on our “A Team” because without you, we may be lost at sea.   Thanks for coming on board and happy Thanksgiving!

Visit my blog:  

Lily and the Roses ~ 

Creativity with Autism, Twins and Military Adventures 

http://lilybrose1948.blogspot.com

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

Visit my other blog: 

Creationlily.blogspot.com 

This is where I display 

my artwork, music compositions and travel photos 

Stop by and share posts with your friends

Creationlily