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 Locked Gate – A Key to Freedom

In the grassy courtyard of our old synagogue, stands a large doorway gate.  Its eye-shaped intertwining metal wiring gave view to a beautifully soft cloudy blue sky that Sunday morning.  In a glimpse that seemed to last quite a while, I had stolen a moment to capture this gate in a photo.  Meanwhile, Jake was swinging up into his own clouds, just a few feet away from me.  He joyfully swung up in the air, clapping his feet together rhythmically in delight; as if his feet were cymbals crashing in percussive accents into the air.  It is what I imagine the ultimate sense of childhood freedom to be - conducting our very own symphony. 

It is intriguing that a predictable repetitive activity would invoke such a sense of freedom.  We often think of freedom as something that breaks through the mundane, the repetitive and the predictable.   We imagine freedom as a destination and maybe not so much an activity.   But maybe, freedom is a sense of comfort in being happily suspended in the air.  When we look down, we have the safety of knowing that we are not far from the ground and when we look up, there is the sense of anticipation of how high in the air we are going to get.  I remember how thrilling it was to swing up in the air as a child. 

When did we lose that sense of fun over simple childhood activities?  When did that sense of freedom and wonderment go?  I still think that it is really only the simple small things, and appreciating brief moments in time as we live in the present, that will ever give us that same sense of freedom.  It may even restore that childish naivete that leads children to ask about what is so intriguing to them.

Looking through the locked gate, I realized that the appeal of taking time to appreciate where I stood was about the contrast of hard and soft – the gate versus the clouds.  Similarly, the hard-wired structure in our lives provides safety and security for us all, just like that locked gate provides security to whoever stands within the confines of those grounds which the gate protects.  It does so all the more for a child living with autism.  This child craves and needs this daily security and a predictable schedule.  He needs the security of a structure with a repetitive rhythm so that he knows what to expect.  This helps to alleviate any anxiety about what is coming up and what he can look forward to.  That repetitive rhythm, just like the rhythmic swinging in the air, creates a comfort and pacing for him; It is his key to unlocking that gate.  It is the key to alleviate anxiety about the unknown.  We all want to loudly crash the cymbals to our own symphony.  Wouldn’t it be something if each one of us could hold such a key in our very hands?

Was the sky so captivating to me that morning only because I was looking at it from a locked gate, or would it have been as beautiful and mystical to me without the gate that was in the way of my view? I wondered.  Is it only those unattainable, those unreachable things that still intrigue us, as if we were still that inquisitive child in the playground? Do we ever really lose the mystique of magical childish thoughts like what it would feel like to touch the sky, or to touch a cloud?  

Oh I have much to learn from this child that is always true to himself.  He is so determined, curious, and unapologetic and genuinely himself.  These are things that most people aspire their entire lives to achieve.  We want to feel that true sense of self and acceptance of who we truly are and to be happy and at peace in that moment in time.  This beautiful child is not burdened by silly thoughts of what others may think of him or how his interests may appear to others.  No, such wasteful thoughts have no place in his young mind.  He knows exactly what he wants, he is strong minded, smart and willful.  Most importantly, he holds the key that unlocks that gate, and is therefore free to be truly himself.

It was only a brief moment in time, there in the courtyard.  But in that moment of looking through the eyes of that gate, I saw there a lifetime of meaning and symbolism.  The key to unlocking that gate as a collective society is acceptance.  We all want the same thing - to be loved and appreciated.  We want to feel accepted exactly as who we are.  Each one of us is a locked gate, and the key to unlocking it and reaching freedom, is acceptance of each individual in all of our true colors.   

Thanksgiving - Reflections Over Bread Crumbs

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

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

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

Art activity

Easter Seals provided a free special week for military families!

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

One of Jake's favorite activities at Yofi

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

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

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

Every child at Yofi got some sort of plate award

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



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


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

Autism Mom – Finding A Balance

As parents who work to facilitate learning/therapies for our kids who live with autism, we tend to put ourselves last.  I am no exception to this, and I fight the struggle of achieving a balance of priorities in my life regularly.  After all, getting through the day in our sort of household is about prioritizing, right?  I have come to realize over the years that what it really takes for me to feel happy is to have a state of balance in my life. 

When you are a family that is at the beginning of your autism journey, right after you receive the autism diagnosis, you basically just go on “survival mode.”  You do what you can as you prioritize the needs of your child.  As time passes and you sort of get into the swing of things: managing the household while facilitating schooling, therapies and appointments, you realize that hey, if I don’t take a time out to take care of myself, I will eventually get sick or simply burn out of doing the daily grind.   The problem is that we don’t have time to get sick and burn out, but our immune system is at higher risk when we are stressed.  More often than not, our kids get sick, it circulates to everyone in the house, and by the time it reaches us, we don’t have time to rest because we are taking care of one or more little ones who don’t feel well.  We have to stay healthy and well to manage the load, and it is always much more stressful when someone gets sick.  I am guilty of having said "I just don't have time to take care of myself," but what I was really feeling was more like: I just don't have the energy to take care of myself while dealing with a full load.  The only thing left to do to combat this dilemma, was to reshuffle my priorities and not forget to add myself onto the list this time.  In fact, why not just make a new list altogether?  So here we go:

My 7 personal must - haves for achieving a sense of well - being and balance

1.  Getting good sleep and proper rest

2.  Nurturing my marriage, family relationships and friendships

3.  Daily/weekly physical activity - Going for walks, being in the sun, breathing fresh air, stretching

4.  Seeking counseling support services when necessary

5.  Staying plugged in to my autism support group/networks – seeking and providing support

6.  Taking vitamins and necessary medications daily

7.  Staying connected to my creative/spiritual outlets – personal development and achieving  self-fulfillment from the things I love to do.

These “must haves” for me, are things that I have found along my way in my personal journey of being a mother who juggles: parenting a child on the autism spectrum, twins, military lifestyle, with a need for a creative outlet.  These are things that I have found that I cannot give up or live without.  I share these to provide support to others who may be dealing with something similar, in finding your own sense of balance, as you progress in your personal and family journey.  

So take that time out for yourself weekly, and daily and do something that brings happiness to you every single day.  If you wait for some point in the future to do this, you may realize that you’ve spent days carrying on and not having done anything for yourself that makes you happy – how fair is this to our kids?  I see this as equally important to doing everything else on the priority list.  It took me some time to finally get to this point where I am making this a priority.   It takes effort every day to keep it on my conscious and I am much more happy and fulfilled now.  I have found my balance and will continue to work on keeping it daily.  I will close off and wish you happy trails in finding your personal balance and share one of my favorite quotes: “When Mama’s not happy, ain’t nobody happy.”   

To new beginnings!

A Cure for Autism? Thoughts and Reflections

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

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

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

Jake's class - reading activity

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

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

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

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

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

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

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 

Creationlily

Major Select - A Major Change?

We are so used to celebrating all of our kids’ incremental as well as big successes.  When something major comes along in one of our (us parents) lives however, it almost seems somehow random.  However random this major thing had appeared to me, there is truly nothing random about it.  All of the steps that had brought us to this point in time were well in the making, since the very beginning of Alex’s military career.  Alex was recently on the list of Air Force Major Selects for JAG Officers.  I was not the slightest surprised.  Although he has some months ahead of him and others to promote sooner, before we know it, that time will be soon here.  We will be celebrating his achievement, his dedication and his promotion.  Our family has reached another milestone in our path.

So what does this all mean to our family?  Do titles really change anything?  Will our day - to - day life be any different than it is today?  Well first, it doesn’t feel like we’re at the beginning of our military adventure anymore.  We are well into its progression.  We’ve endured a deployment during my twin pregnancy in ‘09.  We had the twin’s birth and Jake’s autism diagnosis at our very first base along with Alex being a Lieutenant and then his promotion to Captain at Lackland AFB in San Antonio, TX.   Jake learned to ride a horse in Texas, our twins are literally Texans, and I had my first university music teaching job in Texas.

Now, Alex is a major select at our second base – third assignment, at Maxwell AFB in Montgomery, AL.  Of course this means the obvious change in rank, pay raise, and change of title.  Perhaps it means some more credibility and respect in his career field.  Hopefully it means continued job security, which is huge in today’s economy and dwindling job market.  It also means continued health coverage for the kids’ speech therapies as well as Jake’s ABA (Applied Behavioral Analysis - autism therapy) and occupational therapies – the ABA coverage, being the largest benefit of all three.  It means continued career satisfaction for Alex, who has been very fulfilled with his work, and that in itself, is a major lifetime achievement.  How often do we run into someone who is truly satisfied with his/her job?  Basically, our whole life revolves around Alex’s job.  Moreover, I not only married Alex, I married the military too, for better or for worse.

When we were getting ready to move to our first assignment and Jake was just a couple months old, a friend mailed me a book that she came across called: Married to the Military.  I remember being introduced to all of the acronyms and tips about enduring and enjoying the military lifestyle.  One of my favorite acronyms coined in this book is CINCHouse: Commander in Chief of the House.  That has become a playful nickname when we discuss military stuff.  If someone calls to invite us to some event, Alex would say “hold on, I’ll have to check with CINCHouse.”  It seems like a lifetime ago, when I first laid eyes on this book, and it has only been six years in.  Having children changes someone’s life so much already.  Having lived our military life, with the moves, deployment, work related travel, making new friends and leaving old ones behind, living in new places, being away from family, enduring special needs with our older son and speech delays with our twins, feels like a lifetime of events compressed into only a handful of years.   

Our twins will soon be four years old and barely resemble babies to me anymore – where did the time go?  I’ll tell you where it went.  That time went into the every day things that make up our life of creativity with autism, twins and military adventures.  When we live through it, some things feel like they are never going to end.  Other things however, the enjoyable things, like the way that Max cracks me up every day, Miriam’s sweet laugh, and Jake’s beautiful smile and thick dark hair, feel like they are going to change as soon as I flinch my eye lashes one too many times.  I can’t imagine them as teenagers yet.  I’m not ready for it.  I want to hold on to these beautiful childhood moments forever, those moments that take your breath away.

Something has always told me intuitively that we were supposed to walk this path, to have this life with its challenges and high points.  Somehow, this life all came together for us.  All of the stones have lined up a certain way to create this specific path that we are walking.  Things are by no means perfect.  Certain situations are presented to us in our lives.  It is within those situations, that comes a certain potential.  What we do with this potential, is how we make the best of every situation and every opportunity that presents itself, as it reveals itself to us across our path.  For example, planting some roots everywhere we live and making it a home, without feeling like it’s only temporary, and making the most out of that location by embracing the real flavor and essence of the place with open arms.

For now, a certain Captain in this family has transitioned to a Major Select and that is a real simcha (a happy occasion).  Within this milestone, there is potential for a continued Air Force commitment of "integrity first, service before self and excellence in all we do."  To me though, these core values are merely a reflection of what he does every day at home with his family already, and of course with his job as well.  Time has to simply play itself out and line up to be the right timing, to make it official, when he pins on in a designated ceremony.  The key is, that greatness comes from within.  Certain situations that present themselves to us however, reflect and magnify what is already exuding from the inside.   

Some exceptional situations, draw on our reserves and inner strength.  We may not even have known we’ve had such reserves, but when we are called upon to step up to meet all sorts of challenges, its all about perseverance for us.  Our child lives with autism and we give it all we’ve got, even when we don’t have anything left to give and we're running on fumes.  So in our family, we’ve experienced a Major change times two.  Moving forward, we cheer everyone on in our bunch.  For one day soon enough, our kids will be going through their own metamorphosis.  Spreading out their lovely wings and gaining their own momentum, they will look down with a smile, as we lose our voices, endlessly cheering them on.  And just as our Air Force planes soar towards the horizon, they will be flying high, up and over the silvery clouds.

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

Book on the Roof

A couple of Sundays ago, Alex left for the Army JAG School in Charlotsville, Virginia.   We had been there together several years ago, when Jake was a baby and Alex had a military course.  It is a lovely area with great restaurants and beautiful scenery.   As the days got closer, I felt myself getting more stressed about holding down the fort on my own.  Knowing I wasn't going to have an easy week ahead, Alex gave up his usual Sunday morning to sleep in.  Those two days in a row of sleeping in, almost felt like a mini-spa vacation weekend, especially, since during the following week, I barely slept.   Still, I was anxious about the week that was coming right up, but more refreshed than usual, thanks to my thoughtful guy - a true mensch.

Max, remembering that his dad's last trip was to Alaska, would say throughout the week "Dad, I wanna go wiyou Awaska."  Alex would correct him and tell him that he's not leaving yet, and that he's going to Virginia this time.  "You go Ginia Dad?" Max would question.  "How about the next time Dad goes to Alaska, I take you with me?" to which I quickly added, "make sure you mention, not on business, because you could feasibly get sent there again."   So at some point down the road, Max will be looking forward to a trip to snowman's land, because a child mostly hears what he wants to hear, of course. 

Alex was gone by 9:45 AM that Sunday morning.  As the clouds came into alignment at high noon, little disasters start brewing and stewing, revving up their engines; contemplating what to throw my way, and in which order.  It was only a matter of time before I get hit with the first one.   Like clockwork, there are always potty accidents when dad goes out of town.   It didn't happen just yet, but I was anticipating it - trying to get into a defensive mode of play.   The Wonder Woman costume was proverbially coming out of the closet, and as an emblem, getting thrown on.  The invisible jet hovers over the house in preparation for the first indication of trouble.   Low and behold, it came from the least likely source, later that afternoon.

Mistake #1 - Why did I bother trying to get the twins down for a nap today?

I hand Jake his IPad after lunch and proceed to get the twins down for a nap.  Before I know it, I am in there for a whole hour.  This already leaves me slightly agitated so I decide to leave them in there, to see if they quiet down and go to sleep on their own.  I know that this was probably wishful thinking.  It has happened on occasion though, and I needed the break.  I then take Jake outside to play.

Mistake #2 - Why did I let Jake take his book outside?

Over the past couple of weeks, Jake has been trying to take his toys out into the yard.  Big hit items include books, stuffed animals, and anything else that he can get his hands on; throwing it up in the air to see what happens.  That sounds like a good enough plan.  From past experience, I've learned to block him from taking his stuffed animals outside, as they often end up getting thrown into the neighbor's yard.  I can fully appreciate the thrill factor for him.  The book, well, he mostly wants to hold it while he's on the swing or the slide.  So what's the worse that could happen, right? 

Wrong!  At that point I remember that I ought to go in to check on the twins, as they are not yet quieting down.  I open the door and witness the twins in the process of busily moving Miriam's bed across the room; Max simultaneously informs me that he needs to go potty.  We take care of this matter, and I order the troops to get back to bed, as I shift gears into my tough authoritative tone; letting them know that I'm not playing around this time.  Out I go into the back yard, and see that Jake clearly appears to be very irritated.  "Book, book, I want book."  I realize that his book is missing.  I start looking all over the yard for it, asking him what he did with his book, and why did he take his book out there?  I then turn around to face the house, giving into the notion of a possible ridiculous scenario.  I slowly lift my head to look up.  The book is on the roof! Oy!  Threatening to take the book away if he does this again, I resort to that (mostly) authoritative tone; realizing that yes, I shouldn't have let him take the book out there in the first place.

The book on the roof

Now what? My kid is upset, and his book is on the roof!  It's not the kind of thing that you'd expect to see at someone's house on any given day, but there we were.  If there were only a fiddler up there to ask for help (I chuckle on the inside).  In past scenarios, I've gotten Puppy (his favorite stuffed animal) off the roof when it was close to the edge, but I wasn't sure that I could reach the book.   Thinking on my feet, I go to the laundry room to get the step ladder and kitchen broom.  I march back outside, feeling less then thrilled, proceeding to climb up the ladder with my fuzzy slippers and polka-dotted bathrobe.  Moments later, I triumphantly rescue the book off the roof.  Returning it to Jake, I remind him that throwing the book on the roof again, will result in its confiscation.   I then should have had Jake go back inside.  The day was still young however, and I didn't want him to be inside for too long, fearing he would get restless.   That is our most encountered issue during the weekends.  Before I am able to make the right call, I get distracted with noise coming from the twins' room.  I go back inside to have the cute sleepy-eyed energizer bunnies come out and play in the family room. 

Mistake #3 - Why did I leave the twins to "nap" in their room after I checked in on them for the second time?  The third time I return to their room, I see that their room has been basically flipped upside down - the stuffed animals are all over Max's bed, and books are scattered all over the floor.  I hurriedly start cleaning up, fearing that I am probably nearing the next strike of disaster, and remember that I ought to check up on Jake.  I go outside.  It's like Groundhog Day: "Book, book, I want book,"  my son exclaims.  This time, Book is farther up the roof.  I shout "Jake, I told you not to throw the book up there again!"  Followed by "This time Mommy can't get it down!"  I figure that the book would probably just get blown off at the next wind storm, or eventually disintegrate in the rain.  In any case, it was a job that was not going to get completed on this day, by this one mom.  We came back into the house and I return to my unfinished cleaning project.

As I putt items away in the twin's room, I notice that Max's bed is covered in gold glitter.  I couldn't figure out how the glitter got there, but now there was the additional task of shaking out the sheet and remaking the bed.  One task leads to another, and another task, followed by yet another, in a string of miscellaneous tasks; a glorious taskophony!  When was it going to end?!  Max's voice interrupts my cluttered thoughts with "Miriam peed!" Okay, I thought, I will take care of it when I'm done cleaning up (reassured that she's in a pull-up).  A minute later, I hear him say the same thing, and then Miriam comes to inform me of the unpleasant news, in an unhappy tone.  I go to check, and think oh, no big deal, as I see the pull-up.  Two seconds later, I quickly do a double take.  I realize that it's not a pull-up; she had put herself into underwear all by herself, for the first time!  It had to be on the weekend I was on my own, of course.  As I go to change her, she starts to lose her balance, hits my face with such a force that you wouldn't expect to come from the hand of a three year old, right onto my glasses.  "Ouch!" I respond loudly.  This causes her to cry, adding to the unfortunate stringed series of ridiculous events.  I have to stop everything to take the necessary time out to comfort her, before anything else.  To make a long story short, we got through it.  Everything and everyone (eventually) got cleaned up.

It was just about time again for the brewing of the next disaster.

I take the kids to play in the back yard and within a couple of minutes, I notice that Jake is holding Book again.  But how??  I slowly look up at the roof, and there is no book up there.  How did this happen? It wasn't windy outside for the book to blow off the roof.  It wasn't even breezy, for that matter.   Maybe it was the invisible jet, or perhaps it was the fiddler on the roof?  Why not?  I came up with all sorts of ideas just to lighten up my deteriorated mood.  I needed a good laugh, but I had absolutely no practical answer to this dilemma.

My little Fiddler lost his violin bow in San Antonio

The following day I was playing with Jake outside, and he said "book!" again.   He got up on one of the lawn chairs and motioned up to the roof.  Much to my dismay, there it was - after all the trouble yesterday.  That little book was up there on the roof, again.  It wasn't however situated at the same spot from yesterday, but several feet away at the crease of the roof, and several feet higher.  I chalked it up to not having seeing it there yesterday, possibly due to the way the light hit the roof.  I still couldn't figure out however, how the book had moved several feet over from it's original location.  Even so, my child wanted his book, and I had no idea how to get it.

After I returned home from picking up the twins, later that evening, Jake's ABA tutor told me that Jake did something very clever.  When they were playing/working outside he said "book" to her and climbed on the lawn chair to motion for it, as he had done so with me.  She looked up, saw the book, and most assuredly said to herself, holy cow, there's a book on the roof! - "how do we get it down?" she asked Jake (not anticipating a response, but just talking out loud), to which he actually answered with an unprompted reply, "throw the ball!"  Thrilled to have him verbalize this, she texted me as I was driving, disclosing that something exciting had happened back home, but didn't give away the surprise.  She did as Jake suggested.  She threw the ball up at the roof several times, finally hitting the book.  Sure enough, down came Book.  

#1 smart thing that I did all day?

I hired a babysitter from 4-8PM and went to see a movie and have dinner with a friend.  Ironically, the movie was Silver Lining.  By the time that 4PM rolled around, I needed the break from all the mishigas (chaos, in Yiddish).  This felt like I was intelligently able to plan ahead for some down time, and I was pretty pleased with myself for concocting up this wicked little plan.   Later that evening, it initially took me half an hour to get Jake to sleep.  After talking with Alex that night on the phone, I heard noise coming from Jake's room and saw that his light was on.  I realized that this wasn't going to be a quick fix, as nothing was that day.  It took me an additional hour to get him back to sleep.  This was day #1 of Alex's week away.  I felt reassured that it would be the most eventful one here.  The rest should be easier coasting.  As the school week begins, I would have some time during the day to pace and recharge myself for the kids.  

After Alex returned home from his trip and previewed this current post, he said "so that's how the book got off the roof  - Jake had thrown the ball up there all by himself and knocked the book down that way."  Now, why didn't I think of that? Apparently, I did not give my son enough credit for his clever problem solving skills, although, I had always said that he was a good problem solver, hum!

So what do I take away from this experience?  How do I try to be more prepared for the next time that Alex goes out of town? What is the moral of this story anyway?  I came up with the following:

Trying to have a "normal" day when your co-captain-teammate is out of town, 

is like thinking that you can escape to the roof to read a book;

It doesn't happen very often.  

So get through it as best as you can.

Don't worry about being graceful or being judged,

and laugh about it later over a glass of wine.

We are a team, Alex and I.  We do the best that we can.  We both make a big effort on our individual side.  I do more with the kids when he's gone, and he has to endure being away from the family and the comforts of home.  We make mistakes.  We try to learn something from them.  We move on to the next thing.

To other military moms out there, who endure similar scenarios when a spouse is away;  I salute all that you do.  Be brave holding down the fort, and may the power be with you!

What are some of your tips for making this kind of scenario work in your home?  Do special needs or other a-typical aspects play into your family equation?  I'd love to know if you have any suggestions or funny bits to share.  Feel free to post your ideas in my comment section bellow.

Cheers!

Lily and the Roses