Showing posts with label Gratitude. Show all posts
Showing posts with label Gratitude. Show all posts

Saturday, January 25, 2014

Moving Forward In The New Year


­Another year in our lives has come and gone.  It is a new month, a new week and another cold, but sunny, winter day.  One of the perks that I have come to cherish while living in the south is that I can almost always look forward to a sunny blue sky during this time of year.  Having recently visited the northwest, I found that I had really missed this element of the season. 

I sit here with my musical Soundscapes, the space heater hums away and my down-feathered slipper booties keep me warm and cozy.  I have tried to write recently, but I haven't been able to clear my mind and focus.  I have to be in a creative mode to write, compose, and to just create in general.  If I get in the right mood, things tend to reveal themselves.  The last half a year however, has been less about reflecting and more about action - putting thoughts and goals into motion.  It's hard to quiet your mind when you are in motion and your wheels are still spinning.  That's why I like to find a Zen place in my mind, so that creativity can begin to flow.  It is at these mind-freeing moments that I know that all of the rest will take care of itself.

Finding A Balance - Family Needs Versus Self Needs
Over the past few months I have been trying to find a state of balance in my life.  More specifically, I have been trying to find it in both larger and smaller scopes.  Doing so has enabled me to balance family life with time for myself.  This process started with an image; something that embodies the idea of what balance is for me.  I asked myself what I need and want, set some goals, came up with a realistic plan, and finally, I took action and followed through with that plan.  

The first image that came to my mind was a kaleidoscope.  When we look through a kaleidoscope, we see a vibrant image, but are drawn into the smaller details that produce that image.  The dual, large and small, shapes coexist and are therefore interconnected.  One cannot exist without the other.  Likewise, the family unit is that larger image.  What our role as parents is within our family unit, in contrast to who we are as individuals, affects and plays into the larger family dynamic.  The individual family members are the smaller (but important) details of what makes up the larger image of the family as a single entity.  All too often, we tend to put personal needs aside and focus on the larger image, and what's best for the family usually comes first.  If our individual needs are not met however, it means that the family unit can’t function at it's best.   

The imagery of the kaleidoscope reminded me of something else as well.  I had come across the terms macro and micro in a music theory class years ago, as being two distinct ways of looking at a composition. One way, is to look at the larger picture: the form, foundation, shape of the piece, the expression and how everything is held together structurally.  Then there are also the smaller details: the notes, rhythms, motives, themes and stylistic nuances.  What I didn't realize at the time was what a big role this concept would play in my personal journey and how it would shape my overall perception.   

Looking through the kaleidoscope while perceiving the micro/macro structure and details had made a lasting impression on me.  It is as if a seed had been planted into my mind, later sprouting branches and leaves that open up into that southern winter sky.  They seep in through the lacy intricacies of my life, as swiftly as a breeze blowing in through a soft lace-curtained window.  Consequently, it had become almost a theme, or a motive for me after starting a family.  Since both large structure and small details exist simultaneously, finding that balance in our lives, in a sense, is a multitasking activity.  However, even when we multitask, we still only really do one thing at a time.  How can we be at two places at once? 

A more literal image that comes to my mind when thinking about balance is a scale; like one of those old manually balancing ones.  Depending on which end of the scale things become overburdened, the scale ultimately ends up tipping over towards that one direction.   For example, if a spouse is out of town, and we single-parent for say, a week, the stress and irregularity of that week will end up causing us to use up much more of our own energy than what we are used to.  Typically, the job is split between two parents.  This type of situation, where a spouse pulls double duty, would cause that life-scale to tip to the overburdened side - the spouse in charge of the kids and the house.  These type of situations would cause us to feel like we had lost our balance.  When we lose our balance, it feels like the spiraling chain reaction signals our brain to think that we need to do a better job at keeping the momentum moving forward.  We crave for things to move forward at a comfortable steady pace, in order to keep that dauntingly large life-scale at just the right angle, so that it stays centered.  We do this all in order to achieve the all-too-desirable balance. 

This process leads me to revisit the question of why then should we bother to find or create a balance, when it takes so much darn energy?  Especially when as special needs parents, we don't have much of it to begin with.  I mean, is it truly worth all of the effort?  Well, if I search deep within and tap into a purely intuitive response, my answer is always: to be happy and to have peace of mind.  Part of having that peace of mind however, is to know that I did whatever I could to create that balance, so that later on I could in turn have that peace of mind.  The ultimate goal then becomes holding on to that peace (and also, that piece) for as long as possible.  But after all, it doesn't last long, unless I work on creating, recreating and achieving that sought-after balance on a regular basis.  I truly believe that when we have this precious balance in our lives, we are happy and at peace.

Don't Forget To Nurture (Yourself)
Military life with twins and a special needs child has been a very unique experience.  All of our kids have undergone speech therapy.  As I've discussed in other posts, for the twins it was a pure speech delay, and for Jake it was autism related.  There was a time period when all three kids were in diapers simultaneously and not talking yet.  I know that the stress of that time must have taken a toll on me.  At the time my focus was on moving forward, no matter how slowly.  That seems like ages ago, but it was only a few years ago. Life has definitely caught up to me now in my forties.  It is not only about taking care of the family and balancing it with part time music teaching anymore, it is doing so while managing the daily aches and pains that have caught up with my body.  This has made me realize that I can’t just keep going and going without taking time to regularly nurture myself.

There is almost an underlying pressure that as special needs parents we have to be a super mom and a super dad, to keep our family unit functional and healthy, as well as to nurture our marriage and relationship.  I can assure you that I am no hero.  It is a situation where special circumstances had dictated the course of our family path and I wouldn’t change a thing if I had to do it over again.  I truly believe that we were meant to walk this very specific path and learn what it is that we were supposed to learn on our family journey.  I try to do what I can for my family, just like everyone else out there who has similar joys and struggles (and there are so many more joys and moments that take my breath away that outweigh any given struggle). 

In the past I had fallen into the old motherhood trap, where I focus on mostly everyone else but me.  This is something I know many other moms have done and will continue to do.  Lets face it - it's in our nature to do so.  While this is admirable, it is not the best thing for our health.  Granted, certain family situations may be much tougher than others, but we can only experience our own family situation and make it functional for us.  When I am having a difficult time, I try to remind myself that there is always someone having a tougher time, as well as someone having an easier time.  Thinking about this puts things right back into perspective for me.  

The worst thing that we can end up doing to ourselves, in retrospect, is forgetting to nurture and to take care and ourselves too.  When we carry on this way for a long time it becomes ingrained into our muscle memory, affecting our daily life and routines.  Just like learning a piano piece with the wrong fingerings, or wrong rhythms, where you repeat the wrong motions over and over, it becomes ingrained into muscle memory.  This is where repetition of actions leads to an automatic response over time.  Subsequently, in order to correct this error, we have to slow down our practicing to the point that we could reconfigure our muscle memory, and relearn the correct motion.  Equally, in parenting and special needs, it would be correcting our thinking and behaviors of not making time to nurture ourselves.  At that point, it's very difficult to break out of this cycle.  Change, as I know all too well, does not happen on its own, out of sheer will.  Change initially starts mentally, by slowing ourselves down enough in order shift our attitude, change our habits, and ultimately, taking action in a different direction.

One quote comes to my mind here:
"Life begins at the end of your comfort zone."
Neale Donald Walsch

Does this resonate with you too?

Over time, many things for our family have become so much easier.  Just the kids getting a little older has made a huge difference.  With autism however, as certain things get easier, different life stages present new challenges.  These new challenges are unpredictable and are so different for every individual on the spectrum.   Ironically, with being in school for so many years and having so many wonderful and beloved teachers, my son Jake has been the best teacher yet.  Yes, this cute little guy has been the most amazing teacher for me.  He is the one who has taught me to think about things in a completely different way.   He has taught me to think outside the box and to see things from new angles.  He has taught me to be a better person and a better mother to his younger siblings.   He has taught me to embrace life’s challenges and to focus my energy on the most important things.  I am so very proud of him and how far he has come.  I love his beautiful gentle spirit and his smile that melts my heart.  And I am so proud of our family and the love that we have for one another.

Setting A Few Specific Goals
What has probably helped me the most in creating a balance between family life and me time, is setting only a few specific goals and a concrete plan to be successful at achieving them.  One of my personal goals was to be more active.  So basically, anything new that I was going to start doing would mean being more active.  Jokes aside, I have been going for walks more often, and riding my bike when the weather is nice.  This is something that I want to keep going for the rest of my life.  It was important for me to choose an activity that was not overly taxing, that would be something that I could realistically envision myself continuing long-term.  It has become one of my favorite unwinding as well as energizing activities because it gives me a chance to have silence and to clear my head.  Silence is golden! As I like to teach my music students: silences are just as important as sound.  If we have non-stop sound, our ears get washed out with stimuli.  We get tired of filtering information, and then the music becomes the background, and not the most important thing.  The same holds true in our lives.  We need silence in order to process things and clear our minds.  This makes room for new information to soon get processed by an attentive receiver - us.   On the other hand, if I happen to crave stimuli, I listen to music while I walk.

"The music is not in the notes, but in the silence between."
Wolfgang Amadeus Mozart

Downtime
I prioritized plugging into activities that I enjoy for my down time.  Sometimes that means getting together with a friend over coffee, a dinner out, being creative, stretching (I like to do a mishmash of things I’ve picked up over the years: yoga, dance stretches, physical therapy stretches and Pilates).  It's easy, as moms, to feel guilty if we're not doing something constantly around the house.  After all, when we are at home, there is always something that demands our attention.  There is always something that needs to get done - the job is endless.  I therefore work on fighting the urge to get house stuff done when I'm exhausted, and I just let my mind and body rest without guilt.  I'm not always successful, because just the nature of being home begs to get something done, so I make a conscious effort to make downtime for myself.  It is the best gift that I can give myself.  This makes me so much more of a quality person for my family.

Moving forward in the new year has been about a journey to find my balance.  It is what strikes a chord in me, what motivates and moves me.  It sets my wheels in motion.  And sometimes, when I am parked in place a little too long and need some support, my husband Alex gives me a gentle loving push on the back and this momentum gets me propelling forward once again.  And sometimes, I just take a nap.

How do you like to create your balance?  I would love to know what strikes a chord in you.  Feel free to share here in the comments bellow.  I will part for now with a little old Irish saying, as you move forward in the new year:


Tuesday, November 26, 2013

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!
 

Tuesday, February 26, 2013

The Perfect Rose

The Perfect Rose is a companion piece to my second post: 1-2-3 And Nobody's Talking: http://lilybrose1948.blogspot.com/2012/10/1-2-3-and-nobodys-talking.html  I wrote this piece as a means to track and share about the changes that we've recently experienced with our kids' progress in their individual speech therapies.

Things have not been as black and white for us as I had hoped, but we try to do what we can.  We continue to facilitate learning, to plug into the necessary ports and move forward.  Reading my previous post first, will present to you what had preceded the point at which we have arrived today, and give you a more complete picture.  We have lots of good stuff to look forward to - all the way around!


Jake at a local pumpkin patch farm

Talk is not cheap 
For our family, talk has been nothing short of cheap.  I mean this in the sense that all of our kids have had to go through speech therapy.  Thank goodness for our military health insurance - a huge perk! Had we been paying out of pocket for all of the speech therapy that we've accrued over the past few years, we would be hurting worse financially.  In the civilian world, our life would in no doubt be more complicated in this respect.  We would do what we had to do regardless, and we would find a way to make it work.  It is no wonder that non military families facing special needs take a much harder financial blow, and that's just speaking inside the US.  Granted, many non military families have the ability to make larger incomes than military ones.  It is often at the expense of longer work hours, which means less family time, less vacation time, and poorer quality of health insurance coverage. 

Autism - Past and Present
We are fortunate to experience autism not only in the US, but in this day and age.  Some thirty, forty years ago, it was commonly misdiagnosed with mental retardation and schizophrenia.  Autistic individuals, including very young children, were isolated and institutionalized.  It makes me absolutely furious and horrified at the type of misguided treatment endured by especially vulnerable individuals in our society.

Can you imagine being a parent back at that primitive (comparatively speaking) time, having a psychiatrist pressure you to institutionalize your child?  Imagine how much tougher it was on parents back then.  Moreover, it was all too common to cast blame on the child's mother.  Yes, that was done too - when in doubt, place guilt on a mother, as if mothers weren't going through enough heartache already.

Even though autism has been around for a while, in this sense, it feels like a fairly new field.  There is still so much to discover - so many unanswered questions.  We are hearing more and more about it possibly because it is being diagnosed more accurately now, and therefore, more adequate therapy is being provided.

ABA therapy, (Applied Behavioral Analysis) which has been scientifically proven to help individuals living with autism, is thankfully covered by military insurance.  Out of pocket, it runs an astronomical $3000 per month in the US!  Research repeatedly points to the two main components being environmental and genetic factors.  It is for the most part though, still a mystery, even though our family and other autism families across the globe, live with it 24/7.

Alex and Max

Tick Tock Clicks the Clock
In my post, 1-2-3 And Nobody's Talking, I share about our journey with all three kids learning to speak.  The twins had different issues than Jake; they were naturally more on a similar time frame with each other in their language development.  Over the past few months, they have well surpassed their older sibling.  While we are absolutely thrilled, delighted, and rejoice in all of the progress that they've made, this has been bitter-sweet for us in one respect.  It sets in the reality of Jake's developmental delays even more.

This is the reminder that we are at a race against the clock.  The clock is ticking, and we need to equip our son with skills and tools to help him lead a fulfilling life.  Whether we consciously think it or not, it is always an underlying pressure.  Tick tock; there is only so much that we can do at any given point.  The rest?  The rest is letting nature take it's course.  How do we know when to take a back seat in this learning process?

I have those days where this reality hits home pretty hard for me.  It is not easy not to take it to heart, but I try to think about the many positive things that are happening in Jake's life, and the ongoing progress that he is making at his own pace.  Doing this, is like shifting into another gear, in a way, and selecting the right way to think about it all.  Our thoughts are a powerful thing.  It is so important to keep positive and encouraging, because our children depend on this kind of energy from us - they depend on our hopeful spirit and loving heart.

My son Max, is so in tuned to what others are feeling.  Just the other day, when we were sitting at the kitchen table and I wasn't feeling well, he asked me "Mom, why are you sad?" He thought that I was sad because I was quiet for what he deemed of as too long.  His precious heart just wanted to make sure that I was doing okay.  That was a little reminder for me, of how much our kids feed off of our energy.

We choose to take a realistic approach to accepting where Jake is at any given point in his development.  He is such a wonderful, smart, sweet, gentle boy with a kind spirit.  His smile just makes your heart melt and his words are music to my ears.  Keeping things in perspective though, we have no delusions of autism being a life-long condition.  We are in it for the marathon and not the sprint.  Therefore, we have to pace ourselves for the long haul. 

This is why all of Jake's small successes are a big, no, a huge deal for us.  The other morning, for example, Alex told Jake "I love you," and he answered back "I love you too."  He had never done that before!  Typically, he would repeat the words "I love you" back, or "I love you, please."  He would often tag a "please" at the end of many of his phrases.  Saying something in the correct and functional way is always exciting for us to hear; It is a little special blessing to our day.


Dad and son at a football game - every outing is a learning opportunity

The ABC's of ABA
Jake's speech issues are directly linked to his autism and global developmental delays.  He is now blurring words together to the point where it's hard to understand what he's saying part of the time.  When he does speak coherently, and we don't expect it, we then make a big deal about how awesome that was.  We'll give him lots of reinforcements: complimenting, tickling and hugging, and of course, give him whatever he may be requesting at the time.

To be more specific, he was already at a point where he was speaking more clearly, using up to 5 - 6 word sentences (one sentence at a pop).  He had previously gone through a several month stage of (for lack of a better word) grunting out his words.  This, if you can imagine, is disheartening to see, as he's made a lot of progress already.  This can feel like a step back.

As I've previously mentioned in an earlier post, with Jake's development, it's two steps forward, one step back.  We just have to hang in there emotionally during the step back time, because all of the steps collectively, are a part of the larger learning process - not just for him, but for us, his parents, as well.  Don't give up hope when your child takes a step back - this is not uncommon with autism.

Through the guidance of our BCBA, (Board Certified Behavior Analyst) we work on this by withholding things that Jake wants, until he says a word/phrase correctly (without grunting it out or blurring words together).  This is what in ABA speak is called  a motivator.  For example, if Jake wants a snack or his IPad, we insist that he requests coherently before giving him his desired object.  He can do it, he just has to be motivated to get what he wants.

This principle, pretty much goes against every parent's natural instinct of unconditional love, of giving their child what he wants, and not withholding it.  Much of the ABA principles are completely unnatural for a parent to perform.  It's almost like learning another language for us.  We have had to become fairly fluent in ABA in order to facilitate learning and help our child around the clock, when therapists are not around. 

The concept of a child having to be motivated to perform a request, should not be confused with laziness.  Speech and social aspects are the two main deficits in autism - "the big-hitters".  What comes naturally to a neuro-typical child, like easily requesting a desired object, does not necessarily come naturally to a child with autism.  Basically, different wiring in the brain causes simple things to not be so simple here.

By reinforcing ABA therapy principles, we are able to teach our child how to perform an action.  That one action, (to an inexperienced observer) which may look like it came naturally to Jake, probably took many many repetitions to achieve that "simple" result. 


The lesson here is, 
don't take anything your child does for granted, 
because that simple thing that you see your child doing daily, 
may be much more difficult
 for the child that lives right next door.


Miriam and Max playing in the back yard

Double Time
For the twins, it was initially a speech delay (meaning their speech development was behind that of their peers).  While they have caught up in their vocabulary, they now need some work on articulation.   By the summer of 2012, they were catching up verbally, so we started phasing them out of speech therapy.  While they had caught up language wise since then, they have recently showed recurring as well as new articulation issues in their re-evaluation.

I wondered and asked if these type of issues were age-appropriate, and whether they would resolve themselves over time.  The therapist did not think so, and wanted to address these issues on a regular basis with them.  It's not a scary thing for me, as it was early on.  Back then, they weren't speaking at all (by the age of 15 months), and we feared possible special needs.

Over time, we realized that there weren't special needs involved, other then what I refer to as a "pure Vanilla" speech delay.  This time, we can approach it with a lighter mindset.  They will go once a week to their back-to-back half hour speech sessions, and we will reinforce what's necessary back home.  We are probably looking at several months to a year's time frame. 

Gratitude
You will never hear me tell a younger parent that "once they start talking, they don't stop, and you just want them to be quiet for a little while."  I love the sound of my children's voices and all of the things that they say, even when they are being obstinate.  I still love having them verbalize their feelings, and I mostly try to keep my giggle on the inside, as I find (most of) it very cute.

Having them be where they are today, I take as a blessing with open arms and a thankful heart.  When I keep things in perspective, I am more inclined to be appreciative of how far all three kids have come.  The same holds true for how far Alex and I have come in modifying our parenting approach and adapting to the challenges that we have faced along the way. 

One afternoon, I sat in the courtyard garden of Baptist East Hospital, where all three of our kids go for speech therapy.  I go to the courtyard when it's not too hot and humid as it typically is in the deep South on a summer day.  Catching a quiet moment of solitude and reflection, out of the corner of my eye, I spotted a perfectly blooming rose.

Within that one passing glimpse, this one rose captured all of the beauty in our family's journey.  It was as if the thorns on its stem represented the parents that had to grow a thicker skin, in order to undergo the daily in's and out's of life with autism and speech delays.  They are the protectors, advocates and nurturers of the beautiful flower head, the young child that blooms and grows, reaching his full blooming potential when tended to with care and with love.

That summer's day, that one rose had a very personal meaning for me.  It represented a symbol of hope; and without hope, we couldn't have possibly come as far as we have today.  Our inner thoughts are an incredibly powerful thing.  They affect what we say and how we respond to others.

With this message I convey to you to never give up hope, your inner fire, your inner flame.  Find meaning in the little things that can inspire, like the rose did for me.  Life with special needs can sometimes seem like an uphill battle, but you have to push through those moments of doubt and weakness and stay the course for your family.  It is with hope for the future, and gratitude for all that we have been through at this point in our lives, that we can keep climbing.  The key, is to do so without losing sight of where we are headed, and all of the beauty that is yet to greet us on our path.  We have yet to experience all of the high points of this uncharted landscape.



The Perfect Rose - Montgomery, Alabama



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Sunday, January 13, 2013

The Letter "E"


This morning as I was getting Jake from his room to start his morning routine, he picked up a box of connective squares and letter magnets on his way out the door.  Normally we don't let him take the activity boxes relating to his ABA therapy out of his room (we do his therapy in his room).   ABA Therapy, or - Applied Behavioral Analysis Therapy, is the most common therapy used to help with autism, in which teaching concepts are broken down into many small steps and are reinforced with many repetitions.  Data is tracked in a meticulous way to show a student's progress on a micro and macro level, thus enabling modification to the teaching and custom tailoring a program that is personalized for the individual living with autism.  This morning however, I was curious to see what Jake was going to take out of the box.  We walked into the kitchen and he put the box down on the table, busily searching for something specific.  After some rumbling around, he found what he was looking for, picked it up, looked at me holding it up to make sure that I would see it, and said "the letter E."


 Jake at the Montgomery Museum of Fine Art


Some of the words that Jake sight reads

He was excited to share this with me and let me know that he knew the name of that one letter.  To this, I made a big deal - I cheered him on and asked him "what color is the letter E?" to which he replied "the letter E is pink," answering me beautifully with a full sentence.   I was simply delighted with this little morning interaction, as it was completely initiated by my son, and was not the norm of our typical morning routine.

Over the past week I've also noticed that he's been randomly saying letter names -  "the letter W" and "the letter I."  Our ABA team has been working with Jake on reading through the use of sight words, where he learns to recognize whole words at a pop, and at this point he has well over seventy words.  Apparently for children living with autism, this has proven to be an easier approach to doing this prior to teaching the alpha-bet, and from our recent experience, it seems to be working for our kiddo.

Those of us who are carers for children who live with autism know that there are some obsessive behaviors that our kids can cycle through, and when one behavior is defused, a new one seems to pop up in it's place.  This is very true for our six year old son, Jake.  I have to say that as far as behaviors go, I'm not minding the fascination with the letters, and hope that the attention to detail that I am witnessing, is on it's way to being a productive means to reading and comprehension for him.   The morning continued to be a delight for me with lots of snuggle time, tickles and laughs with my beautiful little guy, without him trying to escape my attention very much and giving into mom's love.  This being in the moment time with my son was a wonderful blessing for me today.  It has me reflecting on this special time with hope for lots of good things to come for the new year with my family.  Those of us that live with children with special needs, can truly know what it means to cherish something when it doesn't come around every day.  This was one of these special times for this one mom.


"Life is not measured by the number of breaths we take, 
but by the moments that take our breath away."

Wishing you all, near and far, many
many special moments that take your breath away in the new year.




 Jasmin Hill Gardens - Wetumpka
One of my favorite spots in Alabama.







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.
 
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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