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

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

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

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

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


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





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






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


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






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

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
Creationlily






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, (http://lilybrose1948.blogspot.com/2012/11/inside-outside-on-top-of-box.html) 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
Creationlily



A Holiday Flame


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


Dreidels
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
lilybrose1948.blogspot.co.il

and also on:

Military Special Needs Network on 7 December 2012
http://militaryspecialneedsnetwork.wordpress.com/2012/12/07/a-holiday-flame/






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
Creationlily




Friday, November 30, 2012

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.
Visit me at:
   
Creationlily
Visit my Lifeblog:  
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.
 












Tuesday, November 20, 2012

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 

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.
 
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Creationlily



Friday, November 16, 2012

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 

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
Creationlily





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