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

Visit my blog:  

Lily and the Roses ~ 

Creativity with Autism, Twins and Military Adventures 

http://lilybrose1948.blogspot.com

Leave me a comment if you find any of my posts meaningful to you.  Feel free to share posts with your friends to help us raise autism awareness and acceptance.

 

Visit my other blog: 

Creationlily.blogspot.com 

Where I display 

my artwork, music compositions and travel photos 

Stop by and share posts with your friends

Creationlily

Book on the Roof

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

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

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

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

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

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

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

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

The book on the roof

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

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

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

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

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

My little Fiddler lost his violin bow in San Antonio

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

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

#1 smart thing that I did all day?

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

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

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

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

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

It doesn't happen very often.  

So get through it as best as you can.

Don't worry about being graceful or being judged,

and laugh about it later over a glass of wine.

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

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

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

Cheers!

Lily and the Roses

Don't Worry Duckies!

1 parent
2 grandparents
3 children
3 bottles of juice
1 Chex mix
1 stop at CVS to pick up
2 loaves of white bread

and don't worry duckies - here we come!  

It's a lovely sunny 68 degrees in Montgomery, Alabama on a Saturday morning in mid January.  You couldn't ask for a better day than this.  A soft refreshing breeze graces my hair, as a white heron flies overhead and lands at the edge of the pond.  A sparkling ray of sunlight reflects on the calm water, where ducks and geese paddle closer into focus.

My folks, whom I haven't seen in half a year, are in town from Seattle for ten days.  We decide to take the kids on an outing, and let Alex stay home and get some much needed rest.  We have been back home for about a week and a half, since our return from our road trip to the east coast.  It hasn't been easy for the kids to get back to their sleeping routines.  Because of that, Alex and I haven't been sleeping well either.  Alex has been getting up with the kids at all sorts of ungodly hours of the night, and letting me rest - bless his heart, as they say here in the South.  Last night, was the first night that the kids finally slept through the entire night, awaking at 6:30 AM!  "Daddy, I slept through the night!" said three year old Miriam to Alex, when he went to get her from her room.  Let's hope that we are back to our groove, we both thought, breathing a sigh of relief.  This morning, I was informed that my dear daughter was up again in the middle of the night.  Alex was up with her, yet again....

We haven't been able to get back to "normal" yet.  For our family, this just means that everyone gets back on track with their routines, school, therapies and regular sleeping cycles.  It's hard to believe how well Jake has been doing with much of his therapies.  He must have really been missing and craving his structured day.  He pretty smoothly got back to his groove, almost right away.  Usually, a change in routine for him on any sort of level, whether it's Alex going out of town, Alex and I being out of town (which doesn't happen very often), or an entire family trip, involves some sort of serious aftermath and paying for it by us on some level.  Typically, this involves undesired sleep deprivation. I have to say, that this is the best that Jake has done post trip, since I can ever recall.  My daughter, on the other hand, had not been doing great as far as sleeping goes, and we were really looking forward to getting past this much undesired hump.

Montgomery Museum of Fine Art

Alabama Shakespeare Festival Theater

Alex and I have been walking around like two zombies, just doing what we could, to get through the day.  We've returned to that one day at a time mode that we lived by early on in the twins' lives.   That's okay, we are able to shift back into that mode, and had become well versed in this respect.  "One day at a time", was my life motto during my twin pregnancy and Alex's deployment.  It's what I had called the "pre baby boot camp", which had prepared me for the "post baby boot camp" after the twins were born.  This was when all of the mishigas (craziness in Yiddish) and the chaos had really began, along the time frame of Jake's new autism diagnosis, back in the summer of 2009.  We've had lots of one days at a time.  This one day at a time thing, we knew how to do.

 
Quack, quack, quack, "don't worry duckies, I'll give you more bread," shouts my three year old son Max, as we giggle at his enthusiasm over this morning's chosen activity.  One of my favorite spots which we've discovered in Montgomery, pretty early on during our military assignment here, is the Blount Cultural Park.  It is a short drive away, and for me, it's one of Montgomery's precious gems.  On the grounds, are the Alabama Shakespeare Festival Theater, the Montgomery Museum of Fine Art, ponds and walking trails.  The museum has a large children's art exploration wing and is free entry.  It is a great way to spend a hot and humid summer's day for restless out of school kids.  Our folks always enjoy coming with us there when they are in town on one of their visits.  The kids' favorite spot at this lovely park is inside the bridge's terrace.  Overlooking the duck and turtle pond, the kids are delighted to throw chunks of white bread onto their eagerly awaiting audience.  This is followed by encore after encore of whatever remaining breadcrumbs are found at the bottom of the bag.

So don't worry duckies, we will be back sometime soon with more bread.  Meanwhile, the Roses will get back into their groove.  In a few days' time, we'll be hopefully paddling in our own little pond, with some much desired coasting time, staying afloat and steadily moving forward.

Visit my blog:  

Lily and the Roses ~ 

Creativity with Autism, Twins and Military Adventures 

http://lilybrose1948.blogspot.com

Leave me a comment if you find any of my posts meaningful to you.  Feel free to share posts with your friends to help us raise autism awareness and acceptance.
 

Visit my other blog: 

Creationlily.blogspot.com 

This is where I display 

my artwork, music compositions and travel photos 

Stop by and share posts with your friends

Creationlily

Sleeping In - The Double Edged Sword

Every weekend I find myself in a similar conundrum of needing to sleep in, being fully aware of the pros and cons of such a cyclical outcome.   The result that I hope to attain from catching up on much needed rest, typically does not match my unrealistic expectation.  I am fully aware that this is a naive notion, where I will not end up feeling well rested.  Sleeping in for only one morning just messes with my sleep cycle, actually causing me to feel like I could have used some more rest.  It doesn't leave me refreshed and invigorated as I would have ideally liked.  This proposition is much like Einstein's take on insanity: "Insanity is doing the same thing over and over and expecting a different result."

This is the opposite of what I've been taught over the years, about how consistency is so important, when one dabbles in a skill based endeavor.  Things that are skill based, such as learning a musical instrument, (for me it was piano) need lots of repetition.  It is only with lots of repetition and committed practice, that we can advance and progress; thus doing the same thing over and over, and expecting a different result.  Perhaps it is with this exact insane type of mindset which we need to be in, in order to be fully committed to our skill based endeavor.  The difference between Einstein's insight and learning an instrument, is that Einstein is speaking in a very literal way about exact repetition.  Even though we cycle through lots of repetitions when we practice, it is an additive process.  We don't repeat the exact same thing indefinitely.  In a gradual progression, we add more music to the repetitions and over time, move on to newer material.  Only in this way, can we really expect to see progress.  If our practice is approached in the correct manner, then expecting results is definitely attainable, and not at all crazy.  Now pursuing a career as a musician, is a whole other ball of wax.  Lump on military changes of station on top of that, and it's a whole other ball game - but this is better left for some future post.  So far, I have been fortunate to find some work in music, with all that we have going on.

Max and Miriam finding new uses for laundry baskets at home

 
Our regular routine during the week is getting up with the kids around 6:00AM.  Alex will either get ready for work or get up extra early for a pre - work workout.  On the weekends, I sleep in one day, and Alex sleeps in the other day.  The problem is that the sleeping in until 8-9AM typically leaves me wired that same night, and it's hard for me to fall asleep.  The very next morning it's my turn to get the kids ready around 6:00AM again, when I'm most likely feeling less then human.  Since I get the opportunity to have that one day a week to rest, I instinctively feel that I should take it.  On the other hand, I am getting to the point where that one day a week thing is more than what it's cracked up to be.   Moving forward, I will try to rest, but not sleep much longer than usual.  Hopefully, this will help with the weekly sleep cycle.   I recall having read an article or two about achieving optimal results by sticking to a similar sleep schedule daily.  I see the merit of this now.

I bet that we all have friends that can tell their kids to stay in their room and play until mom and dad are ready to get up.  I can't even imagine having that scenario in our home; all the disasters that could take place during that unattended time...  Unfortunately, it's not typically a likely reality for families that live with special needs, with very young children, or with both.  Alex thinks that it could happen in the next few years -  but for now, I'm not holding my breath.  What I do know, is that we have to actively continue to make it work - it, being our life with all of it's connective elements.  It's crucial to get rest on a regular basis, so that we can manage the house, the kids and their therapies (I will post about the twins returning to speech therapy later on), while we enjoy as much of it as we can.  We'll go out on occasional date nights, as well as some fun outings with the kids on the weekends, finding little opportunities for special quality time with each of the kids.  We are grateful for all that we have been blessed with, as we strive to learn more about parenting, autism, relationships, and ourselves.  Meanwhile, extending a hand of support to other families coping with autism, continues to be an active part of our life, on our minds, and close to our hearts.

We will continue to make beautiful music, marching to the beat of our own little drum.

Jake stealing the show - Summer 2011

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