Category Archives: Johnny P

Adventures in the chaotic with Johnny and his brothers. Add a little autism, a little brotherly love and the fun never ends!

That Word

Today, March 5, 2014, is the day to Spread the Word to End the Word.  Below is a post I wrote last May after a painful experience right here in my local, “educated” community.  Before you speak Think, Is it kind, is it true, is it necessary.  What one may think is a casual, harmless comment may make one who longs for the presence of their Baby Girl feel a moment of gratitude that she never has to experience such hatred, ignorance and ugliness.  Spread the Word!

 

There are many a day that I think I, perhaps, am no longer fit to mill about with the general population on a day-to-day basis.  A certain tolerance seems to be required that I am pretty sure, I no longer possess.

I try hard to remember that I have endured life events that may make me extremely sensitive to day to day happenings and random interactions with friends and strangers.  I also know that as sensitive as I might be,  is as insensitive and callous as others behave.

To add to my dumbfounded state, is that we live in a society that is all about being “PC.”  We all know that many derogatory names, sadly, can be used to describe various groups of people.  And I would like to assume that none of these names are used in this day and age… but that would be both foolish and ignorant.  However, you generally don’t hear these words bellowed at random places where families gather.

But there is a population that does not seem to always be worthy of such sensitive and “PC” protection and it both breaks my heart and makes me physically ill.  In this day and age, why?  I ask you, WHY? does it seem to be perfectly acceptable for a grown woman to bellow, “I can’t believe my check is the wrong amount, I’M SOOO RETARDED!”

I felt my blood go cold and my stomach flip.  This was my pool.  This was a lady I would  possibly be seeing on a daily basis.  I wanted to scream, I wanted to cry, I wanted to PUNCH HER IN THE FACE.  But I didn’t…and I don’t know why.

So I plead you, Dear Reader, to explain to me, why?  WHY?  I am the one that gets the stare down when I composed myself and responded, “Don’t use THAT word, it is really very offensive.”  Que long uncomfortable stares.  Luckily, thanks to my circus act, I am used to being stared at.  Cause that’s RIGHT…I AM the one they stared at.

I even looked the “word” up in the dictionary.  I had to read through two entries that stated, “retarded child.”  One that is “retarded.”

The third entry down I found this definition for “retarded”:   to make slow; delay the development or progress of (an action,process, etc.); hinder or impede.  

Never a mention of not having the ability, just that it might be delayed.  And guess what…IT MIGHT NOT!  Children with “developmental or cognitive delays” are extremely capable.  Capable of overcoming what others might see as limitations.  My experience is limited to Down Syndrome and Autism.  Both Madeline and Johnny amaze me with what they were able to overcome and what Johnny continues to achieve on a daily basis.  While delayed in some areas, Johnny’s first pre-school teacher said it best…”no one ever said Johnny is NOT SMART.”  And they never said it about Madeline either.

Shaking off that interaction has sucked my energy and sent my spirit plummeting.  For my Sweet Madeline, whom I ache for every day, I had a moment where I actually thought, “Thank God, she will never experience such ugliness and ignorance.”  And then I cried.  Because I would give anything to have Madeline here and be able to continue to experience all the ways she would charm and delight us.  

I am just so sad to know that in others eyes her life might have been viewed as less valued and unworthy.  And now she is forever protected from such hate in her heavenly home where I am sure she is delighting all that gaze upon her.  But that she had to leave us to escape such ugliness has sent me in a tailspin and I can’t seem to find my way out.

And now I feel sad for “that lady.”  (And I don’t want to.)  Because perhaps she will never know the value of every life.  She might not have a Madeline or a Johnny to bring joy to her heart and a smile to her face.  Does that make her “delayed?…I don’t know…but IGNORANT…yep, I think that’s THE WORD.

 

 

 

 

 

 

 

Not My Brand

It’s that time…time to Warp… Time Warp that is.  My friend, Kathy Benson of Bereaved and Blessed, invites us to visit old posts and reflect on our life when we wrote them and what has happened in our life and journey since.  This months topic is advice.  Getting it, giving it, what do you think of advice and what is your favorite brand.

Advice, unsolicited, is all around.  The one thing in these tough economic times that is free, yet, even with that low, low, low price, it is over valued.  Unsolicited advice, in my humble opinion, is pretty much someone’s opinion being thrown your way, and you know what they say about opinions…well, let’s just leave it at that.

This brand of advice,  you might say I am a snob but this brand, the one labeled unsolicited, well, I don’t like it…at all.  In fact I won’t even buy it with a coupon.  My brand is what I would call, sought after, yes, that’s my brand.  What I prefer about my brand is that you go to a source you know and trust.  It is usually advice of good quality, which is the result of more experience in an area, similar experiences, values, and usually a certain amount of mutual respect.  The other brand I have found is somewhat watered down and seems to leave a bad taste in my mouth and a significant cramp in my stomach.

My brand can be difficult to find, but the other brand, well, that is everywhere.  I know, Dear Readers, this is not so unique.  I just think that I have enough circumstances in my life that make me a target consumer for the unsolicited brand.  I seem to be top of the market for “guidance” in parenting, autism, and grief.  Any advice that starts out, “what you need to do is” or “don’t you think it would be better if”, “I know they say he is autistic but”, or generally any statement about Johnny or Madeline that begins “you need…”  The exception is if I say, “What do you think I need to do”, in which case I reverse my previous statement.

Autism and grief, on their own, carry a huge weight and require a strong back bone.  Put them together and I pray I can  somehow manage to stand upright.  An incompatible pair, autism requires Mom to be on her toes, and never let her guard down; whereas, grief, causes me to have trouble staying on my toes and operating with a certain amount of distracted thoughts for my Baby Girl.

It is rough to stay on my toes with these heavy boots.  I re-visit a post I wrote where I discuss advice about moving on a year after Madeline’s death.  It is in its unedited raw state as I originally wrote this piece, Progress?”.

A year and a half has now passed, and yes, I do still get that “other brand” of advice at times but I try harder to consider the source and their intention. It doesn’t make it easier but I know some well-meaning people just want to make things better, that simply cannot be repaired.  Like I said in my piece “unless you’ve walked in my boots” but be “careful they are pretty heavy.”  Now that, Dear Reader, is some of the best, trusted advice I have received from a very reliable source.

My boots are still heavy, but the weight shifts and some days they are a bit lighter to walk in.  The body begins to adjust to this ever present weight.  The path is still rough terrain but sadly, familiar.

I leave you with this, please remember,  unless you have stood in someone’s boots and are sure you know their weight, think carefully and twice, that’s my advice…for what it’s worth.

 

Friday Fun – Bathing Beauty?!

Time for some Friday Fun with Hilary at Feeling Beachie.  Pretty sure it’s a pool party cause it’s that time of year.  Put on your best string bikini (or not) and join in.

(Well, like it or not, here we are…MEMORIAL DAY WEEKEND!  You know what that means…that’s right, time to breakout the swimwear!  I know, say it isn’t so…but it is.  So, do what you must, bust out a few crunches a couple of five pounds weights and tighten it up.  Or be like me…and COVER IT UP!)  Cause Johnny is back and “What Not to Wear” has nothing on him.  Take heed and don’t let this woman’s experience be yours.  Johnny has no filter, and due to many pool “incidents” we might need to share our joy at a pool near you.”

Read and heed people…read and heed!

In honor of Swim Suit season I thought I would begin a tradition…………Welll, at least do it TWO YEARS IN A ROW.  I am considering this my public service announcement.  If you think about some of the SIGHTS you can see at your local pool, lake, beach, etc (ME included) readers take heed, share the “Word” with you friends and family.  After all,FRIENDS DON’T LET FRIENDS make public appearances in “Ill-fitting” swim wear.  Let this “Poor Woman’s” encounter with Johnny be the quiet voice in your head when selecting the “Perfect Bikini” for your summer fun!

Charles Schultz has Classic Peanuts…………….because you cannot watch Lucy bully Charlie too many times.  However Readers, we have ULTIMATE JOHNNY…………..Because some stories JUST need to be RE-TOLD AND PASSED ON.  ENJOY AND SPREAD THE MESSAGE!

Johnny getting his MAN TAN

 (Originally posted May 20, 2011)

Aaahh, it’s that time of year.  The weather is warm, you’re trading in your boots for flip flops and your sweater and jacket for YES, THAT’S  RIGHT,  the swimsuit.  I know, most of us hate it, we avoid it, but if you are a parent of a young child you suck it up, put on brave front and make the dreaded public appearance in your bathing suit.  This can be a traumatizing enough experience, I know.  But as a public service announcement, I feel I must share with you the following story.  Think of it as a cautionary tale when selecting the bathing suit most suitable for your (clearing throat) weelll, shall we say,  body type.

A couple of summers ago we were still living in San Diego.  At the time our options for swimming were the beach (fun, yes, relaxing with my boys, NOT) or a personal invite to a pool.  We snagged an invite to my friend’s pool at her condo.  At the time I was big and pregnant with Baby Girl so I was relaxing at the side of the pool.  All of my boys are great swimmers so they were all over the place.  Johnny is an underwater guy.  I was watching him swim when I saw him swim up to a fuller size “lady.”  Johnny comes across as charming, at first, so she began chatting with him.  My radar started to activate as I noticed him getting closer and closer to the “ladies”.  He a skin guy and she had a lot of it, so I could read his mind.  I tried to jump up to stop the train wreck but at 9 mos. pregnant, it was not happening.

Me:  Johnny, come over here.

Johnny:  No response.  He is busy chatting, touching her arms and pointing to something on her face.

Me:  Come on, Johnny, let her alone so she can relax.

Johnny:  No, Mommy, wait!  (voice getting very excited)  Come here!  I think I just found the UGLIEST woman in the world!

Me:  At a complete loss with nowhere to hide.  I was, after all, wearing a bright yellow maternity bathing suit top and I wasn’t going to be able to run!  But I swaggered over as quickly as possible.

Me:  That is not a nice thing to say, Johnny.

Johnny:  Oh, no, Mommy wait!  Never mind, I think it’s a MAN.

Our pool opens this weekend.  I already have my cover up, do you?

Friday Fun – Party On…

I don’t know if I am still invited to the party, so I decided to do what any respectable girl, with not dignity would, and INVITE myself.  People are usually just to appalled by such a lack of said dignity and self-respect that they don’t ask me to leave.  It’s true, just ask my roommate, “Nurse Mary” from Coronado, CA.  I showed up at her “private BBQ” with a cooler of drinks and stood front and center in every picture.  She was is such a state of shock I just went ahead and moved my bed in before she could come to…TRUE STORY!

Anywho…since I have been out doing 347 kinds of IN YOUR FACE fun, I thought I would join Hilary at Feeling Beachie for a little Friday Fun.  Hilary is an awesome hostess, and I’m sure if she ever met me “in person” she would still let me crash her party and play co-host every once in a while.  Weeellll, maybe not if she actually met me, cause who knows what stories “Nurse Mary” would bust out.

So, I don’t know where to begin.  The fun has been so over the top, I don’t want to come across as “all that and a bag of chips.”  Well, at the  very least I should remain meek and humble…right?  Not be, “LOOK AT ME, GUESS WHAT I GOT TO DO AND WHAT HAPPENED TO ME.”

I hate to keep you, Dear Reader, in suspense, so I’ll just get on with it.  I’ll start with the most exciting event so you can just ride that wave of fun through to the BITTER, and I mean REALLY FUN end.

First, don’t go getting all jealous and everything but here goes…I GOT TO MOVE!!!  Yep, that’s right, I actually got the chance,  twice in ONE year, to pack all of my belongings and that of 4 other people into boxes, trash bags and a minivan and move around the corner and then ATTEMPT to unpack all belongings of myself and the OTHER 4 people.  And listen close, because I don’t mean to brag, but…I GOT TO DO IT WITH MY FRIENDS AND ALL OF OUR KIDS…ALONE.  Why?  Because…a pipe burst at “The School” and it was closed on moving day…so Me, two moms, seven kids, and one CDR (trying to enjoy his retirement) got to do it.

Where was the Captain, you may ask…well, the Navy sent him to OHIO, of course.  Guess they are getting ready to put an Ocean in Dayton or something and needed the Captain’s assistance.  I warned you…it was CRAZY fun!!!

You know what made it over the top?  You guessed it…the PAID movers that took EIGHT HOURS to do FOUR hours worth of work.  They were so nice, they only put about FOUR gashes in my walls.

That was so much fun that the next day I invited the Cable Guy on a CRAZY rain fun-filled day to “not” hook up my cable properly and drag mud through my new to me house.  Just message me and I’ll give you his number so you can invite him to your next “party” cause he is a regular “party” animal.

There is so much more fun to report, but like I said, I don’t won’t to brag so I will just leave you with this last little bit of “fun.”

Tonight when I took Johnny and the Little Brother to the Golden Arches for dinner I got the opportunity to avoid explaining what a “Strip Club” was.  Yep, I left it at, “Mommy, look , that place has its windows covered to keep out the light, it must be an arcade and they want to protect their “video” games. Right, Mommy?”

Me – Silent.

Johnny – “No.  I think it’s a club.  Right, Mommy?”

Me – “Yep, Johnny, it’s a club.”

Johnny – “See, I knew it.”
I don’t want to know how he knew this kind of information…

Johnny – “What kind of club.”

And this is where the FUN just had to end because after living with such wild abandon for an extended period of time it just didn’t seem fair to really brag that I got to use the term “strip club” or “topless dancers” all within five minutes.

Well, by this time, you are soooo jealous you want to know just EXACTLY  where I reside so you can use me for a good time so I will just get on with some Friday Fill -In FUN!!

This week’s statements:
1. If ___ then____
2. ____ is my ___ of the ____
3. Once, I was surprised to find myself __________________.
4. To keep from going crazy, I _________.

What you never wanted to know and never asked…

1. If  I have any more FUN then I just might start hanging out at those special “video game clubs” to pay for said fun.

2. Stretch marks is my of having all of the fun but never actually having to consider statement #1.

3. Once, I was surprised to find myself living in one house for more than ONE year!

4. To keep from going crazy, I see how fast I can pack up everything my family owns and move it to another location!

Don’t be jealous but as I write the “FUN” continues…Bloody nose on new floor…Don’t everyone come to the party at once…but if you do…bring drinks…party on FUN people!

 

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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 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.)

 

 

Back in the Saddle

The last Monday of the month and my friend Lori at LavenderLuz.com, challenges us to find, perhaps, the extraordinary in everyday, or just realize those little moments in your everyday where all is right in your corner of the world, for possibly a moment in time.

As you will read, my moments were not as much perfect as they were defining.

This is quite the task for me this month.  I got to ride on the wave of excitement and euphoria of being cast in Listen to Your Mother – DC for approximately, hmmm, let’s say five days.   It was a wonderful five days, full of excitement, good feelings and possibilities, that hey, just maybe I am a writer.  I was even practicing saying the phrase, “I’m a writer.”  While practicing this affirmation I was trotting around town on my high horse when all of the sudden, WHOA, WHAM…there I was knocked off that horse and flat on my back.

From atop of my high horse, I was then thrown on a busy street and continuously run over by truck full of very heavy items.  Once the trucks had their way with me, I was put limp and lifeless into a Cuisinart and pureed on high speed.

Yeah…I’ve been having fun.

I have to admit I’m a little ashamed.  I have experienced about the worst that a Mommy can, I have my days, but overall I consider myself a tough cookie.  So, why did one phone call, telling me I had to move in 60 days, turn me into a pureed mess?  Why was all the toughness I managed to gather the last 2 years slip away so quickly?

After working so hard this year to establish Johnny in a new school and everyone else into a new home, neighborhood and routine, I felt like I ran right smack into “the wall.”  You know the one, you can’t get over it, under it, or around it.  It is right there in front of you and you feel in a hopeless state.  The idea of Johnny going to yet, one more school, was more than I could take.  He is relatively happy (big for him) likes his school, has a great teacher, and the kids are great with him.  All of this money cannot buy.  I have worked Johnny entire little life for this scenario.  With this as my motivator, I got to work.

Having little pride and no shame, I cast my nets and put out my feelers, asking all I knew, if they knew of anyone moving from our neighborhood and if I could get the landlords information.  We responded to listings that would move us out of our neighborhood but thought maybe we could save some money.  What I learned in all of this is a bit disheartening.  Some of it you might not even believe, but believe me, like I say, I can’t MAKE this stuff up.

It was like I couldn’t give my money away.  And I was trying…very hard.  Landlords who knew their homes were becoming available, didn’t yet know what they wanted to charge, but they wouldn’t tell me what the current rent was because they wanted to increase but they didn’t want me to know by how much.  But they were “good landlords” they fixed the “big” things but not little things, like dishwashers.  Ummmm, no thank you.  I didn’t even bother to go over the definition of “good” with them.

Perhaps my favorite is the gentleman who, after learning where we currently live, won’t rent to us because he didn’t think we would be happy in his house after living in this neighborhood.  Are YOU kidding me, buddy?  What part of I have 60 days to relocate my family and your house keeps my Johnny in the same school did you NOT understand?   Perhaps you don’t know exactly what I will do for that boy!  And his brothers!

Saving the best for last…ding, ding, ding, we have a winner!  Finally, I find a beautiful house, in my neighborhood and I am Johnny on the spot, first phone call, on her door step, deposit in hand, completed life history for application.  Great, all looks great.  Then a couple of days later she informs me she is not taking my check yet, or anyones.  Me, “I thought you indicated you would rent to us?” Her, “Weelll, we’ve decided that my husband wants to review all the applications and then talk to everyone.”  “But I’ll pray about it and you do to.”  “Don’t worry, you’re at the top of the list.”

And with that, I had my moment, not my perfect moment, but a defining moment.  Something snapped, in a good way for once, and I got mad one too many times.  That is it, I hit my limit.  I will never again put myself in a position to beg for help in finding a place to live, or for the “privilege” of renting a home.  I will never put anyone else in that position either.

The praying landlord questioned if the timing of the move to her home would be too much for me.  I am not to be underestimated.  Lady, you have no idea what I am capable of.  When it comes to my boys I will do anything in my power to do what is in their best interest.  And right now, that is continuity.  I have lost count of how many schools Johnny has been to since he was 2 so that tells me it is too many.  His teachers “get him” and so do the kids.  Like I said, I have worked for 11 years to be able to write that sentence.  Oh yeah, and much to his dismay, he gets to be on swim team.  I learned, I can’t explain the value of this to others.  But it is important to me and that is all that matters.  We have had enough upheaval to last a lifetime, and we are done.

In that moment, I learned that even when it feels like I can’t get knocked any lower, I can.  Then, much to my surprise I learned that just when I thought it was impossible, I dug a little deeper and found my fight, my spirit.

Yes, I also learned to balance myself a little better in that saddle, reduce the chances of another WHOA, WHAM incident.

So, here I am, getting back on the horse.  This time with my piggy bank.  Cause now I have to go on down to my local lender and see how much of a down payment I can get out of this little piggy.

Balancing Act

photo

 

This is supposed to be “semi-wordless” Wednesday, but mine is actually, “Write on and on Wednesday” as I have much to say.  If you have been following Life According to Johnny you might be familiar with the “Krispy Kreme” symbolism.  And that sadly, you are aware that it does not mean I love, love, love donuts and can’t get me enough donuts!  In my “world” it actually symbolizes, ENOUGH, ENOUGH ALREADY!!!…I CAN’T TAKE ONE MORE BITE OF CRAP SANDWICH…AND I AM ON THE EDGE!  What edge?  That edge where people begin to refer to me in terms of…”you know…before she…really lost it, or…well, you fill in the blank.

If you are a little confused about how, when and why Krispy Kreme became an adjective in my life, read here, Krispy Kreme Memories.

Like then I have a certain amount of daily stress and other unseemly weight I carry with me.  I know, who doesn’t?  That said, as well as I “think” I may be doing keeping my life in balance, apparently that balance is of such a delicate nature that the tiniest items added to one side of the scale and WHOOOAAAA, I lose my footing on the tightrope, hit myself in the head with my balancing stick and go into a free-fall, thus becoming the previously unannounced act in my own 3 Ring Circus. 

The result, straight into Krispy Kreme mode and a property manager who has surely changed his phone number by now.

Try as I might, not a day passes that I do not feel the weight of loss and grief for Our Madeline.  I operate that that is a given.  I then worry about giving The Brothers a home where they know their sister is missed but that does not keep them from having a childhood and all the positive things you want for your child.  With all the upset and turmoil they have endured, I worry about yet more change.

As with a lot of things in military life, change is something that is usually out of our control.  The dominoe effect of one military persons move is truly mind boggling.  Last week we were reminded of that fact yet again when (seemingly) out of the blue we were informed that the owners of our house were to be returning to the area.  That phone call packed just enough power to push me right off that tight rope I had been walking with such precision.

Moving, in itself, I know, should not be considered traumatic but given the extenuating circumstances, I am just that…traumatized.  Funny, because I know I’m tougher than that.  After what I have endured this should be nothing but it has turned into a big ol something!  The thought of changing, anything on The Brothers, yet again, feels like too much.  Johnny has been doing so well and I pray this does not pile on a whole new level of anxiety and an escape into his Batman world, which I know feels safe and comforting for him, but not so much for the Mommy.

Our hope is to remain in this little neighborhood and right now I am dedicated to that cause.  So, if I show up at your door…run!

Sadly I know this is NOT the WORST.  I know the WORST and this in comparison is a minor inconvenience, if that. However, when you realize you are running on reserves the idea of an inconvenience seems like yet another bite of crap sandwich and frankly, I am full.

Be that as it may, I better chew each bite 20 times, drink some water, wait for another bite and in the meantime get back to walking that tight rope.