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. 

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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