Thursday, December 20, 2012

Wrapping It Up For The Holidays

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

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

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

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

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

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

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

 Happy holidays from our family to yours, 
 Lily and the Roses

Wednesday, December 12, 2012

Absence Makes the Heart Grow Fonder

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

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

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

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

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

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

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

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

When you come to know of a family that is enduring a deployment, 
think of that one little boy, for he will soon grow up.  Some day, he will possibly be 
some other little boy or girl's dad, 
watching out for families in our heartland, 
far away from home.

Visit my blog:  
Lily and the Roses ~ 
Creativity with Autism, Twins and Military Adventures 

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: 

This is where I display 
my artwork, music compositions and travel photos 
Stop by and share posts with your friends

Monday, December 3, 2012

The 2-Way Mirror

Jake at 3 1/2 on Amelia Island, Florida December 2009
Sitting quietly in a dimly lit little room, I look through a 2-way mirror once again. Through it, I see a multidimensional spectrum.  Depending on which layer I choose to focus on, that one dimension comes into focus more clearly.  In the therapy wing of Baptist East Hospital, in Montgomery Alabama, my six-year old son, Jake is having his weekly half-hour speech therapy session.  In this little room, I am able to overlook his therapy session without needing to be with him, thus not interfering with the session and not distracting him in any way.  Important learning is taking place for a child that lives with autism.  Jake is 1 of every 88 children (and of those 88, it is 1 in every 54 boys) who cope with the challenges of the autism spectrum.  These are the most recent statistics from our national Center for Disease Control.  We call it a spectrum disorder, because while some kids may have similar attributes like the social and speech delays, no two children living with autism are truly alike.  But to us, his parents, Jake is one in a million, period.  This is probably true for every parent of a child that lives with special needs. 
Dad and son - Jake at 3 1/2

Every week that we go to speech therapy, I hope to see some sort of progress.  Whether I want to admit it or not, and whether or not this is a realistic expectation, this is always in the back of my head, percolating from inside of my very being.  This is the part of my soul that tells me to never give up hope and to send my positive energy out there with everything that I do for my son.  It is because I am so close to the situation, (I live inside of the box) that it’s hard for me to see the small progress that may be taking place from week to week.  However, as I distance myself from the situation, and take in several months’ worth of therapy (I think outside of the box), I am able to see the large momentum wheel spin forward.  Above, I reference my previous post from 1 November 2012: Inside – Outside – On Top of the Box, ( where parents of autistic kids “live inside the box” in order to focus on the task at hand.  Simultaneously, they have to “think outside the box” in order to problem solve daily, landing on top of the box - succeeding with both, and being able to repeatedly do this, with two feet in tact. 

But doing so is no simple matter.

Reality or Perception

When I think of a mirror, glass or a window, I think of light.  Light is a necessary component to help us see things more clearly.  Light gives us warmth.  Light gives us answers.  If we can see something in the best light, then we know what it is, what it means, and what it can or can’t do.  When we look at an object that captures light, like a 2-way mirror, we are able to see it’s reflection, and what this reflection means to us, is our own perception of that reflection.  We are seeing our child struggle, and we can’t help him figure out the right answers from where we are sitting.  In a sense, this mirror acts as a barrier and protects him from my distracting thoughts, while protecting me from the intensity of what it is like for him to struggle through a regular speech therapy session.  This holds true for any of the other therapies that he has as well.  Is it that we don’t want him to struggle at all, wishing that we could telepathically instill our own previously acquired skills in him?  Would we rather be the child who can see his own reflection clearly, without all these other thoughts running through his head.  On the other hand, would we rather be sitting where we are on the other side, looking at the child who can see only himself?  Looking through these multidimensional layers leaves us with unanswered questions and a feeling that things are unresolved.  Maybe we are trapped inside one of those dimensions, and in our struggle to make sense of it all, we end up getting lost inside of its layers.  Is this reality or perception?

Ironically, the child having the session is not distracted by the mirror or by his own reflection in any way.  It is the parent on the other side, who can feel distracted by what she experiences from her side - her own perception.   It is the observer that takes in a lot of information and struggles to process what she sees, versus how it makes her feel about what she is seeing.  My son, who views the mirror’s side, sees himself in its reflection and typically ignores the mirror.  It is of no importance to him.  He may, on occasion, catch his own reflection in passing, smile knowingly, and move on with his task.  He sees things as black and white in a way.  He is good at concrete thinking but abstract thoughts will not come to him naturally.  The puzzles on the sides above are some of the puzzles that Jake has worked on during speech therapy sessions.

Your own reflection

One of the viewer’s challenges of looking through a 2-way mirror is that while she stands on the window side, one other hidden dimension occasionally sneaks into focus.  This is her own reflection staring back at her.  The viewer from the window side can see through the mirror-window barrier and into the other side, simultaneously catching a light glimpse of her own reflection.  The psychological translation of this event may be that we see a part of ourselves in our children.  We may remember what it felt like to struggle with something in our past, and want to save our child the pain of going through his own learning mistakes.  What I’ve learned through my own experience with autism, is that there are no learning mistakes.  Making mistakes is a part of learning, so trying to prevent mistakes from happening, is really, interfering with the learning process that is taking place.

How does it make you feel when you see your own reflection, when you don’t expect to see it, like when you walk by a building with reflective glass and catch a glimpse of your own reflection?  Does it catch you off guard and leave you feeling vulnerable?  

Jake at age 6 - fine motor skills/occupational therapy session
Jake’s speech and occupational therapy sessions are scheduled back to back on Thursday afternoons, which is when I typically hit my low energy point of the week.  I observe his speech discreetly, but wait in the sitting area during his occupational therapy, and occasionally come in to observe a session.  The occupational therapy is set up differently than the speech therapy.  Occupational therapist and child work in several areas including a gym with various stations, as well as a classroom type of therapy room, which doesn’t have the 2-way mirror.  At that late point of the week, I am usually struggling to make it to the end of the day, coffee or no coffee.  Seeing a tired reflection staring back at me, is sometimes a startling realization of how living with autism affects us parents, and how exhausted we are most of the time.  I almost feel maternal towards the image that glances back at me, as if I am not even looking at myself, but glancing back at a tired child who needs to be put down for a nap.  By putting all of myself into family life with autism, I sometimes feel like I am losing myself in the process, and that can be a scary thought.  It is this particular thought, that is a constant reminder that I need to find my balance.  I need to reach that “Zen” state of mind, where only the things that I prioritize matter (living inside of the box). 

Seeing your own reflection without being ready for it makes you see things as they really are.  It is your own personal truth, in the raw.  You question if it is really you looking back, and wonder if the way that you see yourself, is the way that others also see you.   Can others notice how exhausted I am behind my friendly smile?

At a local pumpkin patch farm, October 2012 - every outing is a teaching opportunity.

Pealing back the layers

After sixteen months of coming here, I realize that this 2-way mirror has given me more than just the 2 obvious views.  I think about the emotions that I typically experience while observing my son going through his therapy sessions.  I wish that I could reach through, pierce the window-mirror barrier and help him through his difficulties, fully knowing that I cannot help him in this way.  He will have to get there on his own timeline, when he is ready and has acquired the skills he needs to get there.  

I also watch all the little successes that he has and quietly cheer him on from the other side, occasionally blurting out a happy giggle or a cheer.  The most difficult thing to watch is his struggle with the new things, and the little noises that he makes in frustration or in an attempt to escape the new activity.  The speech therapist teaches him through different games and activities such as puzzles, stacking toys, reading books and matching games.  Teaching through games enables a two-way interaction, and proper game playing with taking turns, which is critical in triggering speech and promoting a natural social interaction (something of which kids with autism have a deficit).

A spectrum of dimensions

Looking through the 2-dimensions of the mirror can also produce a kaleidoscope effect of other dimensions that shift and reflect into our life with autism.  Three such dimensions keep presenting themselves to my mind’s eye: the past, the future and the present.  I purposely state them in this order, with the present tense being the last, because the present tense is the most important one.  It is the only one over which we have any sort of control. 

The Past
The past is where we noticed symptoms of autism, long before we knew what autism was.  The past presented all the unknowns, and didn’t prepare us for what was about to come. The past is also where we received the autism diagnosis and got started on our life-long family journey. 

The Future
The future is where we place all of our hopes and dreams for our son.  It is with hopeful hearts that we keep moving forward, progressing in our journey to support Jake's development.  Carrying forth our mission of fulfilling our goal for him to become independent, having a meaningful and fulfilling life. 

Holiday lights on Amelia Island Florida, Thanksgiving 2012.  Lights give us a feeling of well-being and give us hope.
The Present
Lastly, the present is the one over which we really have any type of control.  While going on this family journey, we keep the past in our mind, because this is where it all began.  This is where we started.  We look onto the future with hope, because we know that we are doing all the right things for him right now.   It is only with hope that we can get through this life-long journey.  But it is in the present where we must live.  It is in the daily tasks that maximize the learning that takes place.  These are some of the things that we are able to even control in any way.  It is something that I try to remind myself, even as I advocate for Jake and work on raising autism awareness, so that he and other children living with autism, can have a good future – a future where they are accepted and appreciated.  I remind myself that even though Alex and I do what we can to secure a good future for our son, that we must live in the present, with all of it’s ups and downs and learning challenges, because without doing so, we would not maximize his potential to have that future that we dream about.  Living in the present means embracing it all with open arms and accepting him exactly as he is right now.  

As I look to the past to that first week after we received Jake’s new autism diagnosis back in the summer of 2009, and then looked up to the universe and said “bring it on, ” we will persevere into the future, while embracing every present step of the journey, with our heads lifted high, and our hearts filled with a seamless kaleidoscope of light, hope and love.

An evening stroll through our neighborhood in Montgomery - a path leads to the light of a beautiful sunset.

Visit my blog:  
Lily and the Roses ~ 
Creativity with Autism, Twins and Military Adventures 

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: 

This is where I display 
my artwork, music compositions and travel photos 
Stop by and share posts with your friends

A Holiday Flame

Jake sitting behind the holiday candles on the 4th night of Hanukkah.

The holiday season approaches and swiftly passes in a whirlwind of festivities, traditions and family gatherings.  We start off with Thanksgiving and then Christmas, but for our family and other Jewish families across the globe, a little festival of lights known as Hanukkah, is the holiday in between the two.   For our family, the candlelight of the Hanukiah (the Hanukkah candle display consisting of nine candles) symbolizes so much more then a commemoration of the miracle of Hanukkah -- where the candle oil in the holy temple in Jerusalem lasted for eight nights, when it should have only lasted for one night.   

Hanukkah gelt - chocolate coins

For us, the miracle of Hanukkah and the candle that continued to last beyond expectation, symbolizes our burning flame of hope that stays lit twenty-four hours a day for our son, Jake.  It represents our perseverance in coping with autism and keeping the flame lit of hope to find a cure during our lifetime.  As we light a candle each night, we sing the traditional holiday blessings.  We eat the holiday foods of latkes (crispy potato pancakes) and sufganiot (a jelly filled deep fried pastry, similar to a donut), we play the spin the dreidel games (a four sided top with Hebrew characters on it and which has meaning in the game) with the kids, and give them Hanukkah gelt (chocolate filled gold coins).  

A display of hanukiot - the Hanukkah candle lights at our synagogue

An arts and crafts activity

Having three-year old twins and a son that lives with autism, has made it very difficult for us to make it to services on a regular basis.  By the time the weekend rolls around, we are totally wiped out, and going to services at this point means, for us as parents, that we would be chasing our active three most of the time and probably getting a lot of stares, while not getting much out of the service.  Since we don’t want to compete with the service to be the main attraction, we have decided to approach this endeavor in little baby steps.  

Hanukkah symbols
We decided that Alex or I would alternate taking one of the twins as a mother-daughter/father-son activity, and try to build up their tolerance to the service little by little.  Jake goes to Sunday school every week and the twins have a program called “Torah Tots” that meets once a month as well.  For Jake, being in the classroom has been a challenge (just as it has in public school) because of his special needs.  At this point, we are just happy to be able to expose him to Jewish culture, and whatever sinks in at this time is great by us. 

Hebrew alpha-bet hanging
Before I had kids I always thought that of course, they would be bilingual like me, with Hebrew and English.  However, after the challenges that our family has gone through with speech delays and therapy for all three kids, and for Jake the Autism and global developmental delays as well, I am now of the mindset that if they speak one language well – well, that’s good enough for me.  If they happen to pick up some Hebrew along the way, to any extent, then that’s just icing on the cake. 

 A lit hanukiah

The holidays can present some sort of challenge for everyone – whether it be quirky family dynamics, loss of a loved one, special needs, travel discomforts, financial strain, a need for solitude, or just the general holiday chaos.  

 Whatever your holiday challenges may be, and whether you celebrate holidays or not, 
I hope that you find that burning candle flame that holds your passion 
- whatever it is that brings meaning and fulfillment to your life, 
and a hope in your heart.   

~ Season’s greetings from the Rose family to yours. ~ 

A Holiday Flame was featured on Jews News' Facebook page on 13 December 2012

and also on:

Military Special Needs Network on 7 December 2012

Visit my blog:  
Lily and the Roses ~ 
Creativity with Autism, Twins and Military Adventures 

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: 

This is where I display 
my artwork, music compositions and travel photos 
Stop by and share posts with your friends