Musical Strings

Music ~ acrylics

Listening to Andras Schiff performing some of Bach's Prelude and Fugues on my drive home from the base today brought up some emotions to the surface for me - the main one being gratitude.  The genius of Bach never ceases to amaze me.  His musical thread initially starts out with direct sincerity, as if it were as simple as black and white, and then before we know it, a multitude of colors spin out majestically, leaving us at awe of what had just transpired.  They unravel multi dimensions of emotional depth.  Each layer pealed back, reveals gratitude for all of the little intricate details that connect our life's fabric.  A single spool spins out one seamless piece of string.  As it unravels, it unfolds for each one of us, our individual life's path.  

A man who had lived his life not being appreciated for his gifts yet, is only later appreciated and glorified after his passing - much too late.  As we reflect on what we not knowingly let slip through our hands through the cracks of music history, we ought to not let that happen with the little intricate details of our daily lives.  Some of the challenges that spin out our inner struggles, not yet capturing the lessons to be learned from their journey, may only seem black and white to us now.  However, if we let them slip through the cracks of every day's burdens, we may miss the later multitude of splendid color that would spin out too swiftly for us to appreciate.  Once the string completely escapes the grasp of its spool, there would only be a shadow left behind - only an afterthought.  It is with this mindset, that we'd only appreciate things after they are gone - much too late.

Clefony ~ charcoal pencils

Hold on to that piece of thread and take note of every unraveling rotation of that spool, because once the colors start flowing, it's hard to appreciate all of the detailed intricacies that turn that one piece of thread into our personal life's path.  Hold on to the little details with gratitude while they present themselves, and not after they spin right by you.  

There are many lessons to be learned from the life and artistry of one man who was too precious to be recognized during his life's spool of thread.  He was a visionary - ahead of his time.  If we had only known back then what we know now...imagine all the possibilities....all the musical strings yet to be played.

The art featured on this post is some of my music-inspired art. 
View more of my artwork on "Creations" 
 http://lilybrose1948.blogspot.com/2012/11/creations.html  

I have recently started a second blog

Where I display my artwork, music compositions and travel photos.

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Creationlily

 Creationlily.blogspot.com 

Visit my Lifeblog:  

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.
 

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

Horses of Hope

Support can ride on all types of trails

Support can come in all types of forms and sometimes in very unexpected ways.  After we got Jake's autism diagnosis when he was two and a half years old, our three sets of parents wanted to do what they could to help out, even if we didn't live anywhere near them.  During the summer of 2009 we were living in San Antonio, Texas and all sets of parents had to fly in if they wanted to visit us.  We were stationed in Lackland Air Force Base, and during our second year there, Alex was deployed to Iraq while I was pregnant with our twins.  Even though we were only there temporarily, we planted some roots and have some Southwestern family history there.

Fortunately for our family, we ended up getting two back to back assignments on the same base.  Alex worked the first two years at the base legal office, and the third and fourth years in the Area Defense Council.  This was a truly a great thing because had we moved on a regular PCS cycle, (permanent change of station), that summer of 09, we would have had to move shortly after our twins were born and right around the time of Jake's new autism diagnosis.  We already had way too much going on.  We were only too happy to stay for two more years, catch our breath and catch up with our newly changed life.

I always say that we lived a lot of life during those four years that we spent in San Antonio.  Aside from the deployment, the twins being born at the hospital at Lackland and Jake being diagnosed by a developmental pediatrician in that same hospital, one other new thing took place during that time.  Little did we know what a big thing this new little thing would become.

"Whoa"

Alex's mom owned and trained a horse and has been very devoted in working with it as she still does now.  She came to us one day and wanted to have an important conversation about Jake.  She wanted to have him start taking horse riding lessons, as her grandmother's gift to him.  We then read several articles about kids with autism responding in a special way to horses, and how horse riding could be used to support other more standard therapies for autism.  Equine therapy, done with the aid of a horse, has proved to be something very helpful for many kids coping with autism and other special needs as well.

We were open to this idea and intrigued by the possibility of this alternative therapy as a supplemental therapy for Jake.  We started looking for barns that taught kids with special needs and found one, about forty minutes away from our home in Boerne, Texas.  A lady owned the ranch and several horses that were trained to work with kids with special needs, and basically taught out of her back yard.  One of the horses there was so sensitive that it was even able to detect on-coming seizures in epileptic children before they took place (this was not one of the issues for Jake though).  By the time that Jake started his first private half hour long lesson, he was only three and a half years old.  Alex drove Jake on Saturdays to his lessons, and the twins and I would join them when we could.

Since this wasn't a typical horse riding lesson, Jake's instructor had different stations set up and had him walk through the various stations to complete a task.  He got to "walk on" only after completing each task and had to actually use his words to have the horse move on.  Some of the tasks involved picking out various objects (toys, colored paper, cards with letters and numbers on them, small musical instruments).  She would ask him to tell her what was on the card, what color the object was, or to pick a correct object from the bucket.  Most of the tasks involved having to use some speech, which is one of Jake's deficits.  This was really good for him in the sense that there were many motivators there, and the main thing is that he was almost constantly in motion.

This had the double benefit of stimulating many muscles and being relaxing all at once.  It is often also much easier to bond to an animal than to a person, for kids that don't have much/no speech or social skills.  As they learn to command the horse in a non verbal way, they learn to take control and be in charge.  One of our fears early on was that Jake had little situational awareness.  We worried about his safety.  Learning to ride a horse introduced him to valuable skills that taught him self-awareness as well as situational awareness.  These life lessons had further benefits of possessing a great physical activity as well as a possible life-long passion. 

Other tasks involved throwing a basket ball into a hoop while being on the same side of the hoop, and at other times, throwing the ball into the hoop while crossing over the body, thus having to rotate the upper part of his body to complete this task.  Additional activities included walking on the trail and trotting, which he really enjoyed, and would smile and giggle while bouncing on the horse.  Eventually he started requesting "more trotting."



Each time he completed an activity he would either have to tell the horse to stop by saying "whoa," or tell the horse to continue by saying "walk on."  He didn't initially want to use his words, but he quickly learned that he had to use them to make the horse do something.  Back then, he was only able to use one word at a time, mostly for simple one-word request, like "juice" or "book."  Over time, along with his daily ABA therapy and weekly speech and

occupational therapies, he started to be able to string two and three words together.  Now at the age of six, we are at a point where he can say a whole five-six word sentence, thanks to dedicated therapists, teachers, and our 24-hour a day consistent reinforcement of therapy principles.  From the beginning, it was apparent to his instructor that he was very well balanced on the horse, and that he had very good gross motor skills, as well as good physical strength.  With many aspects of riding the horse, Jake seemed to be a natural.  Learning the communication skills was the challenge for him.  We were happy that we stumbled upon something that he may get to be very good at, something that could possibly become his passion.

"More Trotting Please"

We moved to our third assignment (second location) to Maxwell Air Force Base in Montgomery Alabama a year ago in July, 2011, and continued on with equine therapy.  We found the right place for Jake called: MANE (Montgomery Area Non-Traditional Equestrians).  The MANE Idea is about horses and hope - how horses can help to facilitate learning and be therapeutic.  MANE specializes in catering towards special needs.  It is a much bigger place than the barn in Texas, spanning several acres and is also funded by grants.  The grounds include a covered arena that could be used during most weather, riding trails, and a very special feature, the Sensory Trail.

The sensory trail is set up in stations including large wind wooded and metal chimes, a mailbox filled with different activity items every week, and several different activity stations that riders pass through, similar to the concept of the Texas barn, but on a larger scale.  The sensory trail also includes an outdoor covered arena.  The kids learn to groom and care for the horses and this also gives them a special bonding opportunity while they are not yet riding their horse.

The barn doesn't offer private instruction, only classes.   We didn't know initially how that would work for Jake since he learns best in one on one situations, but once he got started, he got used to the group structure quickly.  The lesson also involves taking turns, so he gets that good teacher to student quality, while learning to function in a social situation.  During his first year there, he had one other autistic student in his class, and now during his second year, there are two kids that also live with autism in his class.  Two or three volunteers help the rider at each horse, not including the instructor.

"Walk On"

The barn is not far from our home. I take Jake during a weekday afternoon for a forty five minute group lesson - with the before and after grooming, we are there for about an hour.  This is my favorite drive of the week.  Within a few minutes, we are in the country, passing cotton fields and grazing cows.  It almost makes me feel like we are taking a trip back in time, to a more natural surrounding, where life flows at a slower pace.  I feel more grounded and at one with nature and it's gifts.  This gives me the peace of mind to reflect and be thankful for having a special opportunity like this for Jake.

Yes, support can come in all types of forms and sometimes in unexpected ways.  What's really wonderful here, is that a window of opportunity was created by someone who wanted to give Jake something that came from her heart, and that is a truly beautiful thing - she did a big mitzvah for her grandson.  Walking on to the next station on our trail, we hope to continue to ride with the horses of hope for years to come.

  Military Family Copes with Autism

Lily with Alex and Jake

The larger photo on the bottom is of Jake riding his horse at MANE on the Sensory Trail.

The article above was written by Kelly Deichert.  She is the editor of the Maxwell-Gunther Dispatch (our base newspaper here at Maxwell AFB).  She interviewed Alex and me in April, 2012 for Autism Awareness Month.  Her husband, Maj. Christian Deichert, took the photos for the article, and they are both good friends of ours that we've met only this past year.  I taped the article on one of our kitchen walls, and as I walk by it, I am reaffirmed of how far we have come.  Having this article written about our family is one of the things that has helped me become as open as I am today about the challenges that our family has faced.  Whether they realize it or not, by doing this, the Deicherts had supported our family in a very meaningful way, and for that we are so very appreciative.

It is my hope and goal with blogging to raise autism awareness in support to other families coping with autism.  I strongly believe that autism awareness = acceptance.  Alex started blogging shortly after me, and our individual recollections have consolidated into a family effort to raise awareness, build acceptance, and provide support by sharing about our own family's path.  If you are just at the beginning of your family's journey - never give up hope.  You are not alone.  Feeling isolated can lead to loss of hope.  There are so many families out there going through something very similar, and that is so empowering.  If you haven't already done so, it's time to reach out. 

As the door to finding a cure for autism stands firmly locked for now, 

an angel has left a window open with the horses of hope, 

and we will "walk on" with families across the globe

in our journey to find the right key.

Happy travels,
Lily and the Roses

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

Glass Half Empty / Glass Half Full

What's your choice of glass?

 

There are a wide variety of glasses out there, and depending on which ones we hold, look into, and drink out of, we may have a different sensory experience.  The same could also be said about the different people that cross our life path, depending on which we get to know, some will leave a lasting imprint in our hearts.  Certain people can even influence and uplift us to such an extent, that may cause us to start seeing things through a fresh pair of lenses.  This can sometimes inadvertently cause a bit of a spectacle.

My husband used to lovingly joke that I'm a glass half-empty type of gal.  I didn't especially appreciate hearing this expression at the time, but it made a lasting impression, and that lead me to think about how I tend to view things.  Do I really see the glass as half empty?  If I do, could I simply press a switch, and just like that, see the glass as half full?  I had to take a step back and ask myself what this really means.  Over time, I came to appreciate that he had shared this observation with me.  What I realized, is when I have an issue to sort through, I tend to internalize it and take some time to sort it out.  While processing it however, I ponder on the cons first, and only later get to think about what some of the pros may be.

  Here's a glass - there's a glass

Over the years, and through many parenting experiences, I have started processing issues much faster then before.  I have begun to spend more time on the positive aspects, because that is really where I want the focus of my energy to be.  Raising twins and a son that's living with autism pretty much drains me of most of my energy.  I therefore try to be in a sort of "zen" state of mind, where I don't get upset over all the little things that could easily be upsetting throughout the day.  I pace myself, so that I am able give the best of myself to my kids.  This doesn't mean suppressing things or blowing things off.  It means just selecting which things I prefer to spend my energy on, as far as being a mom, a wife, a support to friends, as well as to other families that cope with autism.  

I don't know that you could necessarily call me a glass half-full kinda person now, but I would definitely say, I am more complete than before our journey on the spectrum had begun.  With this in mind, I thought of the idea of various types of glass as metaphors for how differently we tend to perceive things.  How we see things, can depend on our environment and people that we are with.  It can be the influence of our parents that's left a lasting impression, that of a spouse, a role-model, a doctor's diagnosis, something that we have read, or words from a close friend.  They all can influence how we perceive and cope with autism.

How do you view your loved-one's autism?

The eye-glasses

Depending on how recent one's prescription is, a person could be seeing something that is not completely up to the maximum focus.  That person would then perceive something that may not make sense, or leave him guessing to some extent of what's really there. He would therefore have to fill in the blanks, in order to make up for that deficit.   In respect to autism, that lack of focus could mean a lack of experience, where a family hasn't been on the journey for very long yet.  They are in a new and scary place, and are feeling their way through a new diagnosis and all its implications.  

Not having  20/20 vision could cause a feeling of being overwhelmed.  It's hard to get life into focus, because there are so many moving elements.  It could also mean a lack of focus in applying therapy techniques at home consistently.  In any case, we all want our lives to be in focus, and we want to be focused on the things that matter most.  This prescription calls for both near and far sighted mindfulness, because we have to be focused on the immediate tasks, while keeping the long-term goals at hand.

The Hour Glass

The hour glass scenario, is really, the fear of our life being a race against the clock.  I often feel like we are in this race to try to get as much done as possible for our autistic child during his early childhood.  We want him to be as prepared as possible for life's later challenges.  We want to equip him with skills that will enable him to lead a fulfilling and independent life, where he can make it on his own without feeling lost.  We would always be there no matter what, but that is really the goal of any parent.  I know that many families with kids on the autism spectrum feel like they are in a race against the clock.  This is when we need to slow our minds down and not look too far into the future.  When things start to feel overwhelming, as they can so easily do, I often have to get on the mode of taking it one day at a time.  When I need to, I break it down to one hour at a time - and sometimes, also one task at a time.  This puts things into perspective, which allows me to slow down.  There has to be a balance in our lives as a family.  We can not rush teaching certain skills.  Everything takes time, and things will click into place when they are supposed to - no matter how we personally feel about it.  So we might as well chill out a little, catch our breath, because this is not a sprint.  This is a life-long marathon.  Even if it were a race, we'd have to have our hearts and minds in the correct gear, so that we don't burn rubber unnecessarily. 

The water glass

See-through clear, chilled and refreshing water fills your glass half way.  If you look at it from the bottom up, you'll instinctively think that it's half full, because from this direction you see the water first.  If you look at it from the top down, you'll instinctively think that it's half empty, because you see all the empty space first.  Thinking the cup is half empty would only leave us unsatisfied and thirsty for more water, because we know that the cup can hold a cup worth of water.  Why should we be cheated of the other half when we want it all?  Thinking the cup is half full however, would leave us feeling happy that not only is our cup not completely empty, but it is even filled half way.  All along though, we could have been given an empty cup with no water in sight.

 

How does this apply to autism? 

In my first post "Who Pressed the Fast Forward Button" I share about how nothing ever went the "plan A" route after we got married.  I refer to having a beautiful child with special needs.  Then, when expecting a second child, we had our darling twins.  We also endured a military deployment very early on in our marriage and military life.  More often then not, our path would lead us to "plan B," also known as the lesser known route.  

When we are given a special circumstance for which we didn't plan, we have a choice of how to view it.  We can look at it as an opportunity, or instead feel helpless and overwhelmed.  It's only natural of course, to feel overwhelmed with new and unexpected situations for which life did not prepare us.  However, to not take the situation into our own hands and turn it into an opportunity, would be a loss.

We could choose to see things through "Plan A," where the cup looks half full and make the best of that unique opportunity, or view things through "plan B," with our cup half empty.  If we look at the cup as half empty when dealing with autism, we really have no where to go but to be stuck in one place, and that is not a fun place to be.  If we intend to pace ourselves for that life-long marathon that autism is, we've got to change the way we look at the glass.  

In the end, looking at the glass as half full or half empty can feel like we are running round and round in circles, and it's not even that important.  After all, what's really important here, is what we do with the water content inside of our glass.  It's about how we become our child's best friend, advocate for him and love unconditionally, and then love him some more.  It's about how to make the most out of every drop inside.  Oh, and with the half empty part of the glass, let's use that as our deep breath of fresh air, that we so often need but forget to take.

 

And lastly - the kiddish cup, it's not a glass

This wine goblet is used for Jewish ceremonies and holidays.  It is made of an ornamented silver or ceramic, and is traditionally filled to the rim.  We all share in taking in the blessed wine to represent us sharing in the thankfulness of the fruit of the vine.  As in many of the blessings, it's symbolic of being thankful of the simple daily gifts that we are given.  Tradition calls to fill my kiddish cup to the rim.  So I raise my glass to all of life's trials and tribulations: the not knowing where we are headed in a few years, and all of the daily effort our family puts into making the most out of our busy and challenging day.  I find myself deeply fulfilled, more then I have ever imagined.  I am connected to every step of our journey.  My life's cup has runneth over, and is filled way past its rim.

To life - L'Chaim!

Closing thoughts

The way that we perceive things is so important, because it does influence our decision making abilities.  Once one door is closed and seems to be locked forever, are you able to then find an open window and take in a new unexpected and special opportunity?  When we first got Jake's autism diagnosis, just a few short weeks after our twins were born, we took a week or two to process it all, and let ourselves be upset and feel what we needed to feel.  Then we decided together.  We looked at each other, and said to the universe "bring it on!" And oh baby was it ever brought on!  Our mindset though, allowed us to keep our feet firmly planted on the ground, and we set out on our very interesting and meaningful family journey.

Once you've pin-pointed your choice of glass, 

have you discovered if you fall under: 

A) The glass half full?

      or the 

B) Glass half empty?

     or maybe you are

C) In some things one or the other 

(with some things you have a "plan A" 

and other things you make a new plan, 

"plan B" when something unexpected happens 

that takes your first plan away)?

Whichever your preference may be, 

and whichever path leads you in your journey, 

I say to you: 

May the water glass you drink out of, 

the hour-glass you look into, and the eye-glasses that you look through 

be well worth reflecting on.....

Glass Half Empty / Glass half Full was featured on the New York Autism Speaks Facebook page on 5 December 2012: https://www.facebook.com/autismspeaks?fref=ts

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

Pregoploymentcy

I like be creative by composing music, playing the piano, drawing, painting and writing.  I also enjoy puns that lighten the mood, no matter how badly the outcome may be.  I usually save this privilege for people that know me really well - so you don't have to worry about getting hit over the head with one of my puns just yet.  This occasionally does regress a step further.  I make up words by stringing two or more words together, to form a lovely concoction of flavors.   In this case, it pertains to a very meaningful personal experience, to which I'm sure many military spouses can relate.  This one concoction contains elements of surprise, exhaustion, extreme happiness, extreme sadness, isolation, bitterness, rising through to the end, and some humor.  Humor, being an element that is a must, for any of the concoctions that make up our life of creativity with autism, twins and military adventures.

So here we go -  Pregoploymentcy 

Definition:
The art of coping with a pregnancy while a husband, partner, or significant other is deployed.

This definition also calls for some equations that can be a result of a scenario such as the pregoploymentcy.  For instance, in order to break things down to fully appreciate some of the major components of this scenario, I like to think of it like this:

Deployment = stress on a spouse and stress on the whole family.

Deployment + Pregnancy = experiencing stress and personal hardship.

When you factor in another very important component to this equation, we get: Pregnancy + deployment + passive support = undergoing extreme personal hardship.

Lump on one more factor to this lovely equation and we have:

Pregnancy + deployment + passive support + stress of a possible upcoming autism diagnosis for a 2 year old = One exhausted pregnant lady that's barely able to cope, but will rise to the challenge, anyway because that is what you have to do.

Military Support During the Deployment

I love the military for so many reasons, but I have issues with the type of passive support provided during some deployments.  To say that I didn't have an easy time during Alex's deployment would be an understatement.  I can think of three people that were there for me by means of calling me on the phone up to once a week, or inviting me to an occasional coffee or dinner outing.  Some people offered passive type of support by saying "give us a call if you need anything" but didn't call to see how I was doing, didn't e-mail or stop by the house, no matter how close they lived.  The more times that people said that to me, the more irritated I got about this passivity.  What I saw was not a lack of good intentions, but a lack of follow through.  I really needed a more active type of support.  It didn't have to be anything special or anything big.  The passive level of support made me feel like while I was trying to embrace this new military life style, it is not readily embracing me back.

I was feeling more and more isolated.  I'm sure that living off base in an area that is as spread out as San Antonio, had something to do with it.  Alex and I had also talked to great lengths about how various branches of the military cope with deployments differently.  The Army for example, deploys whole units at a time.  You can imagine the spouses sharing a comradery.  They all know what the other is going through, so they naturally want to be there for each other; the situation itself lends to be of support.  The Air Force only deploys a couple of people at a time from any given office.  Most of the spouses don't really relate, unless they've already gone through this experience before.  Keep in mind that bases are different depending on the mission, but I have not seen much active support for the spouses that get left behind.  This unfortunately left a bitter taste in my mouth.  I had a difficult time dealing with these negative feelings; it took away positive energy that I needed during my twin pregnancy and single parenting Jake.  What should have been a very joyful and beautiful time in my life, was more difficult than I could have imagined.  I'd like to believe that as more and more JAG's deploy, the level of active support will improve.

Twin A and Twin B

 In one of my first ultrasounds where we listened to the baby's heartbeat, I thought and actually said out loud, "if there's another baby in there, I guess we'd miss that second heartbeat."  My mother-in-law was there with me for that one appointment.  I don't know why I was thinking that.  I guess on some level I must have already known.  Since twins didn't naturally run in my immediate family line, it was the last time I entertained that thought and put it out of my mind.  It wasn't until my 20-week ultrasound that I learned that I was having twins.  I had a feeling that it was going to be one big baby, as it was strenuous on me from pretty early on.  Thankfully, my mother was at that appointment with me at Lackland AFB.  I can't even imagine getting the news and having to take it all in on my own.  It was just too much happiness not to be able to share it with anyone else.  The lab technician did the ultrasound and jokingly asked if I would like for him to name the baby.  Playing along, I said "sure".  "the name I give to your baby is Twin A and Twin B."  To his response I shouted "I Knew it!" and mom couldn't believe her ears.  I was eager to get in touch with Alex, but since he was on a training mission at another base in Iraq at the time, I had no way of calling him directly, and I didn't want to give him the news over e-mail.  It took us about 24 hours to finally connect.  I stringed him along over several short e-mail messages, without giving anything away, until we finally got to talk and share in the exciting the news. 

Civilian Support During the Deployment

On the non-military side, I had one friend who flew in from Seattle to visit me for a week, early on in my pregnancy.  Another dear friend from Scotland came to stay with me for five weeks, to keep me company and help me with Jake - a blessing.  Family wise, my mother stayed with me for a month, and it was the best time during the deployment.  My father-in-law came for a few days visit, and then Jake and I came with him to Florida to spend Thanks giving together.  My mother-in-law also came for a short visit.  But as for local help, aside from what I had mentioned, it was shockingly scarce.   This is a matter that had affected me in such a deep and personal way, that Alex and I decided to be supportive to other military spouses, in a way that I wished I had been; even though I didn't benefit from much of this type of active support.  It is my hope that by doing this, other deployed spouses will see a positive example for themselves to emulate going forward.  I'd like to see the good will move forward and eventually become the norm.  It shouldn't have to be something that spouses have to stress over.

Weekends were the most difficult time for me during the deployment, because that is when families spend time together.  That is when loneliness can really set in and mess with your soul.  That is why I make a point of inviting spouses on weekends, in order to make them feel like they are a part of the family, they are included, they are wonderful and special.  They are not forgotten about.  Looking back, I now light-heartedly refer to this deployment time as the "pre-baby boot-camp."  One of the pluses however, of going through something like this early on in our military life (Alex deployed during his second year of active-duty) was that we got it out of the way early on.  Even if Alex gets deployed again, it will never be as difficult for me in the same way that it had been.  I will not be pregnant, we won't be stressed about an on-coming autism diagnosis, and the kids will be older.  If it happens again, I will be able to tolerate it better.  It will never be the first time twice.  It also taught me a hard lesson of having to make it on my own and to be my own best friend through tremendous challenges.  This on it's own, is absolutely a priceless life lesson.

Third Trimester

The Return of Capt Dad

Alex and Jake at the airport -  homecoming April 2009

 Just because the deployment was over, it didn't mean that there were no challenges left for this little family.  There were some post-deployment reintegration issues for us to sort through.  This is common for our returning service members.  It took me some time to recover emotionally from this whirlwind.  Unfortunately, it caused some unnecessary friction throughout and after the deployment for Alex and me.  Alex was as supportive to me as he could have been at that time, but it just wasn't enough to get me through my feelings that quickly.  It was going to take some time.  On the up-side, he was back for my third trimester and was not going to miss the birth of our twins.  That was a relief as well as very exciting.  It was nice to have him accompany me to doctor visits.  It was very fortunate timing for us, and we felt lucky to get to share this together.  We both knew of other couples that didn't get to share the birth of their child together.

Double Duty 

Once Alex returned from Iraq in the spring of 2009, we only had a few weeks to adjust to being together again as a family at this new point of our lives.  We got the twins' room set up and got reacquainted as family.  On top of which, we were observing more and more changes that pointed to autism in Jake; it was quite a scary thing.  We knew that this would be another big challenge for us, but we really had no idea what was about to transpire.  Taking care of two babies at a time, additionally, would stretch our abilities.  There was so much to accomplish, but the transition went by quickly - for better or for worse.  We had to be solid, focused, and be determined to get through it - even if it meant getting through it one day at a time.  That is what most of our early days after the birth of the twins were like.  The "one day at a time" motto I lived by during the deployment was practical and doable for me.  I was already in the correct gear from the "pre-baby boot camp." Looking back on it all, it was one big exhausting blur.  The good news was that the twins were healthy, so we were very happy, sleep deprived, but extremely thankful.   We were delighted to have these three wonderful children bless us by coming into our life. 

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 

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my artwork, music compositions and travel photos 

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Creationlily

2 Black Keys

Piano, my oldest friend.  I have known you since my seventh year.  My first instrument loaned from a neighbor's, while they were far overseas.  I used to go to their home and treat myself to your black and white keys, as if you were a candy treat.  I chose you, my oldest friend, but little did I know that this was going to be a life long friendship, like the 2-colors of your ivory keys.  Or maybe, it was you that chose to help me find my path: to help me express things without having to find words, without labels, without making things fit into boxes.  Not even needing to see pictures in my mind, I only need to hear your resonating sound, and my spirit is ever uplifted.

How could I not share music with my kids?   

Growing up, I always thought that when I have kids, I would of course teach them to play the piano.  Having taught piano lessons for over twenty years (hard to believe how fast those twenty years have flown), it seemed even more natural for me to want to do that.  With Jake's autism however, it wasn't going to be that straight forward, as nothing usually is with autism.  Even teaching the basic recognition of the two different colors of the keys, and that the black keys were grouped in alternating groups of twos and threes, was not so simple as it typically was when teaching others' kids.   If I ever encountered behavioral challenges of young kids, it was mostly because they didn't want to sit through a lesson.  With Jake's autism, it wasn't an issue of him not wanting to be there. It was the challenge of finding a new unfamiliar way, that would work for him, to teach him what I have taught for years.

Piano For Autism

I decided that I wanted music to be a part of Jake's ABA therapy.  I have his therapist use a toy baby grand piano as well as our upright acoustic piano, to have him repeat short basic rhythmic patterns that she plays.  This develops pattern recognition and aural skills.  Through his therapy and music being taught in an ABA manner (Applied Behavioral Analysis is the most common autism therapy that instructs with lots of short repetitions) I figured that he would build some tolerance to eventually sit through a real half hour long lesson with me.  I also did a bunch of experimenting, to see how long of an attention span I could get from him.


I did a lot of hand over hand instruction, so that he could feel the keys move under his fingers; tapping into potential muscle memory.  I tried to not speak a whole lot, since his attention span was short already.  When I did speak, I would do so in a consistent rhythmic pattern.  For example, I took the pattern of short-short-long while simultaneously saying "2 black keys" at least two times in a row.  I positioned his index and third fingers to make a V shape/peace sign, and with hand over hand did the "2 black keys" exercise with him.  He eventually followed along and started chanting those words in that short-short-long rhythmic pattern.  Since then, he has on several occasions, sat on his own at the piano, and did this pattern by himself while using his words.

I used the same type of teaching with the twins, even though they are not living with autism.  Using ABA teaching techniques can be used to teach anyone.  Kids living with autism will benefit from it the most, because they don't pick up on many things as naturally as their neuro-typically developed piers, especially social things (but that's saved for another blog post).  The teaching style of breaking a task down into several smaller/shorter steps with many many repetitions, is what gets optimal results.  

The twins are only three years old, so their attention span is not very long.  They just mostly want to play on the piano for a few minutes and move on to somethings else.  I don't push it on them or Jake.  I want to expose them to music and have them take interest by seeing me playing the piano.  I then have them play at their request and just interject brief spurts of teaching moments.  The other day, they were both fighting over playing the piano.  They both wanted to show me that they can do the "2 black keys" in rhythm.  So far, they have not differentiated between the groups of 2s and 3s, so they chant "2 black keys" while playing on the 3 black key group with an open hand.  Forget that peace sign Mom.  I don't force correcting them very much, because they want to be independent so much.


For now my old friend, I'll keep exposing the kids to your two-toned steps, and as their attention and tolerance develops, more teaching will take place for the musical Roses.  A moment of reflection puts things into new perspective for this one student.  Just as the two black piano keys repetitively resonate for my kids and unlock a world of possibilities; with one key turn I wave goodbye to my childhood piano lessons.  The second key turns, unlocking a door to a hope with new possibilities.  Once again, I am ever uplifted.

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

Inside - Outside - On Top of the Box

Living inside of the box, thinking outside of the box, and landing on top of the box with two feet in tact, is no simple matter.  

First of all, what is this box?  Is this a puzzle box?  It's not just any ordinary puzzle box.  This is a box that does not have a cover picture of the finished puzzle on top.  This box does not come with any type of instructions.  What this box does contain, is many many little puzzle pieces that have the potential (if connected with care) to change the world.

Living inside the box

Living inside of the box is what most of us do daily.  Being inside the box means that we have a secure structure in place.  We know the rules and we can follow them well.  We have our daily structure that's filled with routines and breaks (hopefully).  We take care of ourselves and we take care of our children.  Most often it's the other way around.  We go to work; whether that be in or out of the house, we come home, have dinner, some type of unwinding to the day, some social time during the week or the month, bed time routines, sleep/reboot and start all over the next morning.  Living inside the box once our life changed, meant that to do so, we had to put some sort of blinders on.  We had to become more family centric, manage our priorities, and not get too over-extended.  Our energy was limited and it had to be channeled into the necessary ports.

This was our life up to the summer of 2009, before Jake's autism diagnosis at the age of two and a half, just a few weeks after the birth of our twins, Max and Miriam.  This was the time frame just after Alex's return from his deployment to Iraq.  It was only the second year into our military life, so everything was new.  There were no training wheels for this kind of a ride.  

To make matters even worse, we had no family that lived in the same state.  Everyone was not even a driving distance away.  We were in San Antonio, Texas - the middle of the country, yet felt very much alone.  Little did we know at the time, that we were not alone.  Not even hardly.  I remember going on our first Walk for Autism that year, and getting blown away by the hundreds of people that were there to support their loved ones.  Whole offices came to support a child of a co-worker.  The entire fire department was there to support a single child.  That child, to many folks, represented many children; our children that were everyday heroes coping with autism.  I remember being touched to the core by that.  That day will stay etched in my memory forever.  That walk, to me, was a huge success, because there is strength in numbers.  It was a success, because every individual represented one piece of a very large puzzle.   

Thinking Outside of the Box

Thinking outside of the box is something we have to do in order to solve problems right?  Solving problems is what some people get paid the big bucks to do.  This is something that parents of autistic children have to do daily.  It's basically fighting your instincts to do something the way you've been taught to; the way common sense tells you to do.  The challenge here is that even though families coping with autism have to go into the mode of living inside the box, they have to do so while they simultaneously think outside the box.  This commonly takes place when parents are wiped out and at their wits end.  It's like being a magician without any training.  You always have to have another trick up that sleeve, because plan A is not usually the plan that gets approved.  

We can not super impose a structure that we think ought to work on a child that is wired differently.  We have to try to understand what they are thinking and feeling.  We basically have to reprogram the way that we were taught to do things, and break down a task into many parts with lots of repetition, in hopes that something will click.  

Children with autism can be incredibly smart, but keep in mind, they just learn differently.  This is where you hear lots of parents say that their autistic child has taught them so much.  These children teach us how to teach them.  This is incredible!  They teach us to stretch the limits of our patience, and pull out strength of character from places that we didn't even know existed inside of our humble being.  They teach us how to be sensitive to an infinite degree, and if we can be that way with them, that means that we can access these qualities in other relationships as well.  These children often excel in areas and fields that require the utmost attention to detail: music, science, computer programing and engineering.  They can contribute an unbelievable amount of talent to our society, if we help them reach their full potential.  This is done from early childhood, by getting an autism diagnosis and getting plugged in to the necessary resources.  There are variations to resources to some degree depending on the specifics of the diagnosis (to include but not limited to): ABA therapy (Applied Behavioral Analysis - the most common therapy to help with symptoms of autism), Occupational Therapy, Speech Therapy, and in our house-hold, equine therapy (horse assisted therapy).  See more on Jake's experience with equine therapy in my post: Horses of Hope  http://lilybrose1948.blogspot.com/2012/11/horses-of-hope.html).

Standing On Top Of The Box

We are all a part of the larger puzzle.  Until there is a cure for autism, there will be no cover picture on this box my friends.  Autistic children become autistic adults.  It's a life-long condition.  The 1 in 88 statistic will soon enough get down to 1 in 50.  It's not if, it's when.  At that point, almost all of us will know a family that is coping with autism.  What then??  This is the reality.  We are facing a global situation of epidemic proportions!  But on a brighter note, you can make a difference.  You really can.  By actively placing your own puzzle piece into the puzzle, you are personally helping.   It doesn't even take much.  Reach out to families that cope with autism and let them know how much you care.  Offer to help in any small way.  Teach your children kindness and acceptance, and the dangers of bullying.  

When we stand hand in hand together, we can see that picture on top of the puzzle box much more clearly.  The bright light that shines through the still-missing puzzle pieces asks you to join us.  Join our cause.  We become uplifted and start to care even more deeply.  We want to make a difference and raise awareness and acceptance.  We want to become the voice for our children, who can not yet speak and advocate for themselves; their fledgling wings are not yet strong enough to leave this nest.  Let's help uplift the children through their teen age years and into adulthood.  Help them reach their full potential of living meaningful and beautiful lives.  After all, isn't that what every parent wants for their child?  We know that our personal efforts can be a very powerful thing.  We may not be able to change our child's autism, but we can change the world to become a more accepting place - a place where everyone can contribute to society.  We can help the world embrace the autistic child with cradling arms of love.

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