Monthly Archives: April 2013

Perfect Moment – Together Again

I’m back!!!  There has been so much happening, so much to ruminate and blog about, so, why the absence…it’s a little thing I call ANAYLYSIS PARAYLYSIS…self diagnosed, of course.  Risk factors include  buying a house (the one house we looked at), trying to pack to prepare for said move,  interviewing for a job, preparing Johnny for his First Holy Communion, attempting to train for a half-marathon, all while preparing to bare my soul on stage in front of friends and strangers.

Let me stop, right here, Dear Reader, and confess, I did not run the half-marathon.  Yes, my Dad is rolling over in his grave.  I am officially a QUITTER!

In my defense, it was the same morning as Listen to Your Mother, and I was advised by Dear Friends that I had perhaps lost my mind and in fact, it was a “terrible” idea and to really put the fear of God in me, I would go on stage and “look like crap, cause who looks good after running 13.1 miles??!!”  I know, harsh but true words.  Well, in all fairness, there are those who do look great after 13.1 miles, I…am not one of those people.

So, I did it, I quit.  And with that off my plate I spent the next 2 days in a complete state of self-induced crazed chaos preparing myself for my big stage debut.

Now it is Monday, the morning after, and I find myself in a daze, trying to remember if it all really happened.  Thinking myself too busy, I planned to write about this sometime after I had the chance to process the experience.  Thanks to Lori at LavenderLuz and Perfect Moment Monday, that sometime is now.

Back in February, with much trepidation, I took myself to a random hotel in Northern Virginia to audition for the DC cast of Listen to Your Mother.  In Perfect Moment – No Whiners or Quitters  I wrote about this amazing experience and actually being cast in the show.  I thought that was the hard part.  Turns out auditioning was nothing compared to the feelings that threatened to stop me in my tracks and render me unable to head to the stage.  Because what I discovered was that telling people I was going to read “my story” on stage was, in reality,  much less intimidating than realizing…WHAT THE HELL HAVE I DONE?…I’M GOING TO READ MY STORY…LIVE..IN FRONT OF LIVE, REAL PEOPLE…ON A STAGE!

As I processed this fear, as irrational as it was, I chose to deal with it on a superficial level and channel all of that off the chart Anxiety into the major life decision known as, “WHAT SHOULD I WEAR?”  Taking my gift for indecision to a whole new level.  It was a personal best.  In my quest for just the right look I purchased two dress and SIX, yes SIX pairs of shoes.  I had to make a decision before I melted my credit card and/or The Captain figured out what I was up to.

The result was a game time decision in which I walked backstage with one of each shoe until I couldn’t even stand myself and knew it was time to hide my crazy.

Never mind the shoes,  I was about to go out and BARE  the contents of the deep recesses of my heart and soul to an audience.  Standing backstage I could feel my heart racing as I contemplated the floorplan and just how possible it would be to exit stage left.  Then I thought how can I be afraid?  Haven’t I already been called to do the impossible, the unthinkable…I have buried my Precious Baby Girl.  Everything else, in comparison, is a walk in the park.  And so, I kept walking… right across the stage and into my seat… donning my red, white and blue dress, in honor of  our Madeline, our 4th of July Baby Girl.

Then it was time…Our Time…time to “read” our story.  The story of the unexplainable grief and pain when you become one of “The Club” and you are called to bury your child.

Despite feeling naked and exposed I began.  Once concerned about my pacing and tone, after a brief moment the voice I heard didn’t even seem like mine.  My heart and mind got lost in my love and longing for Madeline that I almost forgot there was an audience.  Finally, I had the stage, the platform to tell all present…my Madeline is gone, she was loved and adored beyond measure, my heart is broken beyond repair and I will never be the same.  But I have people, club members and dear friends who serve as a soft place to land and a shoulder to lean on when the days are unbearable.

After the show, to my hearts delight, I had a few people come up and thank me for sharing my story and  Madeline.  Some asked her name again and wanted to know a little more about her.  Of course, I was delighted to share.  Words can’t convey the emotion when some of the hugs were not accompanied by any words… just a big squeeze, a knowing look, and  tears.  Then it hit me…I really did tell this story for others, for others who cannot.  That’s what us club members do.

The absolute, hands down best was that I SWEAR I felt Madeline with me.  A  surreal feeling that I could, perhaps, just reach out and kiss her sweet face, just once, but to make any move would destroy that magic place and she would go away.  I felt her presence and told our story and I am so glad that I did for that one… perfect moment… when Baby Girl and I were together again.

 

 

The Road Traveled – Part 3

Johnny does not have school today, so he is chillaxin!  As always, no matter the day, the season, when he went to bed, he is up by 6, at the latest!  If he happens to sleep till say…6:30, he accuses us of letting him ” over sleep.”  No alarm clock is required for this 6 a.m. revelee, because Johnny was born with an internal clock that the makers of Rolex and TAG Hauer would covet.  If nothing, Johnny is prompt and accurate.  His motto, “Time is of the Essence.”  Or as he tells us, “The Early Bat gets the Worm.”

The Early Bat!

The Early Bat!

I should not be complaining about the 6 a.m. wake up call as early on in our trip, sleep deprivation was a major pothole and when I say MAJOR, I am not exaggerating…at all.  There was one of these potholes about every half-mile and no one seemed to be able to find the correct material to fill the hole so that maybe it would only be a bump in the road.

Anytime I had the opportunity to speak with another Autism parent the first thing I would ask is, “Does your child sleep?”  But I said it in more of a pleading tone, hoping that parent would know some secret that would unlock the mystery of my non-sleeping child.  He literally would have dark circles around his eyes.  I would tell the doctors:   “Yes, he has a regular bedtime.”  “Yes, he has a bedtime routine.” “Yes, he falls asleep but does not STAY asleep.  As with most issues encountered on this autism road trip, there were no answers except to simply “adapt.”  Easier said, than done.

Many a day I would call his teacher to let her know that I had no idea how long Johnny had been awake.  At times “lack of sleep” would win and I would not even hear him in the morning.  This would then start my morning off with a racing heart realizing I had no idea what he had been doing.  Johnny was a master escape artist so I would only begin to breathe once I found him contentedly in front of the t.v. or cut him off at the pass as he ran his 100th lap around the living room, humming along to soothe himself.  Each time I walked in on this scenario he would come to a screeching halt, take one look with a face and voice void of emotion and flatly ask, “what?”  Having too many questions, a 5-year-old could never answer, I simply said, “nothing” and would then go contact his teacher.

Imagine a non-sleeping child, two brothers, and 2 tired parents trying to take any type of vacation.  That’s right, you have a family of 5 sleep deprived individuals wondering why “every other family” can do something as simple as go away for a few days, but for us, a vacation was more like the road trip from hell.  The pot holes were too many and we began to lose the desire to even fill them.

The stress began to grow on our family but as always, “comforted” by  others always reminding me how “LUCKY” I was that he seemed to be “high-functioning.”  Funny, and sadly, I did not feel, “lucky” but raised a non-whiner, quitter or complainer, I thought…”well, guess I am, so I better figure this out, because clearly no one is going to help.”  Why would I need help?  I didn’t even think I could ask, after all, wasn’t that for parents who weren’t as “lucky”.

By this time Johnny had an “educational only” diagnosis of autism but not a medical one.  The medical one was a bit trickier because we were “so lucky” that he was “high-functioning”.  And as I said before, Johnny did not test well.  Growing weary and frazzled, I began to figure out how I could get some help.  And how Johnny could finally get the ever “elusive” autism diagnosis so I could get some directions while traveling this road that seemed to be an ever-growing turn about with no exits in sight.

Traveling down this road, especially in the early years, has given me gray hairs, dark circles, and an addiction to caffeine.  It has also taught me perseverence, compassion, acceptance, how to yell at strangers and how to laugh… really hard and embrace Johnny for who he is, who he was born to be…cause he is waaayy cool…and as I say about my life, I’m not sure about “lucky” but blessed…absolutely.

 

 

Want to hear straight from me?  Of course you do!  So, tune in.  Tomorrow, April 16 at 11 a.m. est until 12 I will be a guest on the popular radio talk show,  “Stop Raising Einstein.”  with author and host, Tara Kennedy-Kline.  Tune in to hear more about the road I have traveled, my life as a special needs parent and all the fun along the way!  You can even call in!  877-864-4869

 

 

 

 

 

 

 

 

 

Friday Fun – At the Ol’ Ballgame

It’s ME…I’m baaaccckkk!  Where have I been?  What have I been doing?  I know you have been wondering.  Well, concern yourself no more, I will fill you in…becaues it is Friday Four Fill In Fun with Hilary at Feeling Beachie and I made it to the party.  Brought sunscreen and everything!

Sooo…what have I been doing?  Out living life in the wild, in your face with crazy, wild abandon manner that I am accustomed to, of course!  Because why take it easy when you can go through your life on the edge…of sanity.

Besides wouldn’t it just be plain boring if say,  I dropped The Big Brother off at baseball practice with the correct team and he didn’t have to chase his mother’s car through the parking lot, only to have his mother step on the gas and leave him in the dust.  Yeah…I think so to.  Plus, practicing with a strange team was good for his people skills.  It was brought to my attention that perhaps this could be his strong argument for getting the cell phone that I am so against.  My response…NO.  Because despite being an honor student, after his mother left him breathless, in the dust of gas fumes, it never occurred to him to use someone’s phone to call me.  If he can’t use that brain to think, “maybe I should make a phone call”  well, than, I say…”sorry about your luck…oh yeah, and maybe we should start you on a running program.”  Perhaps speed work would help.

Like how I turn the tables?  Me to.

If the beginning of this Baseball Season is any indication, it is going to be a long season, in which, I acquire quite the collection of wigs and dark glasses.  Finally, after much running around like the crazy person I am, having wild fun being three places at once, I managed to make it to The Big Brother’s scrimmage.  I discreetly took a seat in the bleachers.  Johnny chose to assume his baseball cheering stance:

Go Team!

Go Team!

 

Yep, Johnny looovvves baseball season.

There not quite 5 minutes and The Little Brother announces to me, God, and everyone, that he in fact, “Is Gasie.!”  Forget that cramped feeling, I had the bleachers to myself, as the crowd quietly dispersed.  Well, a few stuck around.  That is, until Johnny began to express his great desire to wrap this game up so loudly and incessantly that from across the field, from the other dugout, the other COACH yelled back, “THERE ARE ONLY TWO BATTERS LEFT!”

Long game…we were only there the last 2 innings.  Speaking of wigs, should I be a blond or a red-head?

Well, since the day is young and there is more fun to be had, packing my house into boxes for my second move since July, etc.,  I will get down to business with the Four Fill In.

This week’s statements:
1. I don’t like to ____
2. I love to ___ in the morning
3. If I could change one thing in my life it would be _______
4. If I was better at _____, I would _____
And now…everything you didn’t want to know but I’m telling you anyway.

1.  I don’t like to have children with such a poor level of fitness, they can’t even catch a car driving through a parking lot.  Hey, I was going slow.

2.  I love to fantasize about joining the witness protection program in the morning, after reminisce about the previous days fun.

3.  If I could change one thing in my life it would be to add more chaos, I don’t have enough chaos.

4.  If I was better at scheduling and organization, I would have nothing to blog about.

Happy Friday!  Have fun and please, if you see me, buy me a drink, it’s been a long week!

The More Things Change

Late to the party…AGAIN!  Here it is Wednesday, night at that, and I was supposed to be doing the Time Warp on Tuesday but, alas, it did not happen.  My blog post spent the day traveling around in my head, festering and mixing with my Middle School substitute teaching gig.  That is a lot going on in one mind and I already seem to operate on distraction mode.  Wanting to give my hostess, Kathy, at Bereaved and Blessed, my undivided attention, I asked if we could do one of those “day after” kind of things.  You know, like when you have to be too many places on Thanksgiving so you have a dinner the next day.  Personally, I’ve heard of this but my attendance has never been that demanded on any given day.

The theme for this party is April.  Kathy invites us to do the Time Warp and revisit a post we wrote in April, about anything.  And then reflect on how things have changed since then.

Sounds simple.  Problem.  I have not been blogging too terribly long but knew I had at least one April under my belt.  So I checked.  Nothing.  So I checked again.  Nothing.  So then I looked to see what was going on and discovered I had nothing.  I had written nothing last April!  And then it hit me.  I checked back and discovered that last year the closest I came were a few posts that I wrote in March.

Although April is a time of new beginnings and all things blooming, last year I was more stuck in what we called in California, “May Gray.”

Last March,  Madeline had been gone 16 months.  She was 16 months old when she died.  Easter was approaching.  As a dear friend, who also buried a child said, “something about Easter just sends me over the edge.”  Amen.

In addition, I was trying to prepare myself for an upcoming move which would force us to pack away our Sweet Baby Girl’s things and I was having a very hard time coping.  I couldn’t bring myself to put myself out there, so I didn’t.  I retreated.

But before my hiatus I reflected on the realization that Madeline was now gone as long as she had been alive in “Sweet 16, Baby Girl.”

The more things change…the more they stay the same.  Almost a year later and I am still in that place…the place where I still think, “how the HELL am I going to keep doing this.”  The 2nd day of each month, my heart feels a little heavier and tears swim behind my eyes.  And the what if’s and if only’s…they are still there as well.  As for that Detective…yes, I know he might have been doing his job, but I am still mad at him.  Some common sense and compassion would have been nice. Instead of explaining to him what Down Syndrome was and her medical history, I could have been holding my Sweet Girl for a few last precious minutes that I will never, ever get back.  Sadly, the hospital did NOTHING compassionate, whatsoever!  And this still haunts me.  And I still miss her every second of every day.

As counting the months turns to counting the years, the hole in my heart does not seem to heal but the love that Madeline planted there continues to grow.

And this… this I still believe:

“For 16 months I knew I saw a quiet wisdom in her eyes and was sure I must be looking at the face of God… for she was perfect in our eyes.

You are loved Precious Baby Girl, you are loved and adored, and you were and are……………….GOD’S PERFECT CREATION.” 

The Road Traveled – Part 2

Johnny had his first of many evaluations between the ages of 2 and  3, or just a few months shy.  I do remember vividly this first evaluation and completing the endless paperwork to document Johnny’s milestones or lack thereof.  As I filled out each sheet I wondered if these people were going to think I was just crazy or how did I let this child “go” this long without getting him any “help.”

 

Johnny at 2 showing his captivating smile!

Johnny at 2 showing his captivating smile!

 

My answer, yes, maybe I was a little crazy but anyone who has traveled any stretch of this road knows that feeling is just one of the many perks of taking this scenic path.  But, no, I did not “wait” this long to try to get him “help.”  I had been trying to get “help” and “answers” for months and months.  Problem was, by the time I got my whole story out to any doctor I would be given the “broad range” of normal option and hurried on my way, as I was using more than my alloted appointment time.

As I said before he also did not “test well.”  From day one, Johnny has not fit into anyone’s parameters.  He was always very affectionate and would climb into people’s laps and snuggle in.  While this won many hearts, it seemed to really skew any observations.  The message seemed to be that “typically” a child with Autism would not exhibit such affection.

And about Johnny banging his head on the floor?  The advice, “he will figure out it hurts” and stop doing it.  By the end of these doctor’s appointments, I was the one wanting to run screaming and bang my head on the floor.

This feeling of frustration only fed into my growing “guilt” that perhaps I had done something to cause all of this.  Earlier I mentioned that  the doctors called him, “happy to starve” as a newborn.  When I tried to nurse him he ate and seemed “content”.  Problem was, I was barely producing milk so there wasn’t much to eat but unlike his brother, he did not make a peep.  From the get go, Johnny squashed all those parenting tips like, “don’t worry, if he is hungry, he will eat.”  Turns out being hungry, apparently, was not that big of a deal to Johnny.  For many years, I worried that perhaps this was the “cause” of Johnny’s developmental delays.  His mother had starved him and stunted initial brain development.  That was it, I was sure.

Evaluation paperwork always had the potential to take me to the next exit, labeled, “guilt” or “bad parent.”  I took these exits often.  Don’t know why.  Guess there was no sign that said, don’t waste your gas, taking this exit will only get you no where.  So, being a slow learner, I took them often.

At this first “official” evaluation by early intervention I remember that he had to stack blocks.  Ten blocks to be exact.  Johnny could only stack 8.  Not good enough.  Delay.  Bad mom.

Where had I gone wrong that my 2 1/2 year old could not stack blocks.  More guilt. What kind of Mom doesn’t teach the basics?  How did I not realize he could not stack blocks?  What had I done?

Again, I was quite convinced that we were traveling this road, clearly, only because I was a very bad driver.  Had I been better I would have noticed signs earlier and been driving somewhere else…like to the store to buy more blocks for Johnny to stack.  Because had I been paying attention, he surely would have been an expert in this block stacking business.

When Johnny was about 16 months old, the Captain deployed to The Gulf.  The Big Brother was 3, Johnny was 16 months old, and I was pregnant with the Little Brother.  Good times.  No stress, AT ALL…in case you were wondering.  Please refer to Krispy Kreme Memories for any clarification.

During the time of the Captain’s deployment I was not focusing too much on stacking blocks.  I was just trying to get through the days.  That Christmas the boys had gotten a train table and trains and Johnny was hooked.  He would spend hours playing quietly around the table and with his trains on the floor.  This was great, I thought, a child that can entertain himself, as I chased Big Brother all over the place.  It was right before the Gulf War started and I was just a little stressed out, as we had no idea when the Captain would be coming home.  So, you got it, I blamed myself for not being more “aware” of Johnny hitting the block stacking milestone or why I never questioned his contentment to be alone.  I was just happy, at the time, that he was happy.  What Mom wouldn’t want that?  Right?

So there I was in the midst of evaluations, growing more and more convinced that had I done more and done it better, all would be well.

What have I learned traveling this road and continuing to take the blame and guilt exits?  It’s like nailing jello to a tree.  Nothing, and I mean, nothing gets accomplished.  Plus every time I took that exit, I had to then do a u-turn to get back to the road I needed to be on.  But not knowing where this road was taking me, I didn’t always trust the signs.

(This is Part Two of I don’t know how many posts, on our early Autism journey, when I was not quite “aware.”  Please check back to see which exits I  take, which I miss and where the road takes me.)

 

 

 

The Road Traveled – Part 1

April is Autism Awareness Month and today, April 2, is Autism Awareness Day.  I have been giving a great deal of thought to this month and day dedicated to Autism and what, if any, special meaning it may possess.  As many an autism parent would probably say, “I don’t need a special day or month to be aware, I am very aware of autism, every day, 24 hours a day.

To be completely honest, until this year I don’t think I even knew that April was dedicated to Autism.  With it being such a huge part of , how is that possible you might wonder.  Actually, I have been thinking the exact same thing.  But then I started taking a little walk down memory lane and the road that Johnny and our family traveled into the world of autism.  With a cold sweat I am recalling the bumpy trip complete with twists, turns and unexpected potholes.

I remember the same story I repeatedly told many doctors and therapists.  Yes, Johnny was full-term.  No, there were no complications during my pregnancy.  No, there were also no complications during delivery, unless you count he was born 20 plus minutes after I arrived at the hospital and I basically had to bite down on a piece of leather during the delivery, so… no drugs were ever involved.  Any feeding problems? Yes, he didn’t seem to interested in eating.  The doctors called him, “happy to starve.”  Nice, huh?  Yes, he seemed to like to be held.  No, he did not  have normal motor development.  He did not sit up until he was close to 9 months old and at 12 months he still did not crawl.  Not to worry, I was told, there is a broad range of normal.

Johnny at 14 months, sitting, observing, even then.

Johnny at 14 months, sitting, observing, even then.

What did I learn?  I don’t care how broad that range was, something told my gut that all this was not “normal.”  I just felt it.  That was at 13 months of age when he finally started to crawl.  By 18 months, when he took his first steps, I heard many a story about everybody and their brother that did not walk till later, “and they were just fine.”  “Really?”, I would say.  This is what my lips said but my heart was listening to my gut.

Finally at about 19 months he was fully motorized and had one speed…FAST!  And let me tell you, he was a Special Missions dream because he was quick and silent.  He uttered not a word.  All he needed was a pacifier and Thomas the Train and he was a happy boy.  Take one of those away…and he was not.

From the age of 19 months until about 3, silence and speed was a pretty scary combination for Mommy because during that time the Little Brother arrived and I wasn’t always as quick as Johnny.  One look down to “check” on Little Brother and poof, Johnny was gone.  This can’t be “normal”, my gut and heart repeated.  A 3 year old boy should not be “ok” walking out of a hospital and wondering in a parking lot, or taking the escalator in the mall to the toy department at Target.  Or another favorite heart stopper, taking a running dive into the deep end of the pool.  Every other 3 year old seemed concerned with “where Mommy was” but my Johnny seemed completely oblivious to his surroundings.  That is, unless they were dark, loud or crowded and then I knew he was aware.  How?  By his blood curdling screams.  Tantrums that could win Oscars.  How can this be within “normal range” my brain started to chime in.

I would have given this whole “range of normal” approach more thought while children slept and I had some down time.  Except for one small problem, Johnny did not sleep…EVER!

When Johnny was 3 he attended a local church pre-school.  His differences and social delays seemed obvious.  Finally, someone started to see things through my eyes and a pre-school teacher who was not afraid to “hurt my feelings” bluntly answered my cry, “do you think I should be concerned?” with a “Yes.”  To this day I am grateful to Ms. Barbara with her observations and honesty coupled with Johnny having Aunt “K” in the autism business we were finally on the road to somewhere.  My heart, gut and brain all agreed.

At about 3 years-old, Johnny was evaluated by early intervention specialists.  Some answers, but very vague ones.  Turns out, Johnny, does not “test well.”  Meaning, no one seemed to be able to “figure out” what was going on.  So with the very broad “developmental delay” label we entered the world of IEP’s and therapists.

Still, I just knew, this wasn’t the end of the story, but finally, not only was Johnny getting help, but so was I.  At last I was getting some answers as to why my basic parenting skills that I used on The Big Brother seemed useless on Johnny, why he ran endless circles in the living room, and why he was obsessed with lining up Thomas the Train and then looking at him from all angles.

When I look back at those years one question I ask myself, why?  Why did I go this mostly alone?  Why did I never seek out parents going through the same thing?  Connect with parents from school?  Wouldn’t it have helped?  Probably…but I guess I was so busy navigating the road we were traveling, I never thought to ask for directions.

(This is Part One of I don’t know how many posts, on our early Autism journey, when I was not quite “aware.”  Please check back to see which exits I miss and where the road takes me.)