Autism: Goofball and the Honor Roll

autism sparkles-169

I have to apologize for having not shared any cupcakes so far.  Yes, it’s Wednesday…but today has been an unusual day.  It has been full of more sparkles than this mom ever thought she would see.

Today I attended the 7th grade awards presentation at my spectrum kiddo’s middle school.  It was good.  It was enough that my boy, my spectrum kiddo who was never asked into regular ed, the same boy I had to fight for and convince the school to TRY him in regular ed for six months, was receiving his HONOR ROLL award.  That was enough.  He has been on the honor roll for all four quarters this year…and he earned that…no special ed, no pull out time, no resource minutes. Just the team work of good teachers and a spectrum student.

That would have been enough.  It would have been plenty.  It’s an accomplishment to just be where we are since we started out “behind the eight ball” so to speak.  No social skills, severe speech delay, severe expressive and receptive skill delays, inability to follow more than one and two step directions, full-blown-snotting melt downs in class, and a stubborn streak a mile wide.  We were not regular ed material once upon a time.

Like I said, honor roll would have been enough.

When he walked into the gym, I saw him right away.  He was wearing his red Boston Red Sox t-shirt and it was easy to find.  What surprised me was that he was walking beside another boy, a much bigger boy I did not know….and they were talking.  They were actually having a conversation!  MY BOY…was talking casually…to a PEER.  Not in a social class but just walking…and talking.

It took me a moment to catch my breath.  I quietly got up from my seat and sought out the teacher he was with since I am trying to come up with a list of kids to pair him with in classes for eighth grade.  This kiddo he was with seemed to genuinely like my boy and I liked that a LOT so I went right ahead and asked the teacher as much.

He ushered me into an office so we’d be out of earshot of the kids and other families waiting for the program to begin and he tells me that THAT kid, the one with my boy, is one of the most popular kids on campus.  He is the star athlete and most popular and he the teacher tells me…wait for it…”he really likes your son, he kind of takes care of your boy and really looks out after him.”  My heart filled. I had no idea.  To me, he just looked like a nice kid.

I thanked the teacher and went back to my seat and I noticed my boy climbing into the bleachers.  He was climbing up to where that same boy was sitting with his friends, the popular kids.  When my boy approached, my boy tried to squeeze in, to sit next to the boy he’d walked in with but the other kids would not make room for him.  I thought my heart was going to sink as I watched them usher my boy to sit else where.  In a quick second, I watched the boy who’d walked in with my boy, physically slide the other kids down enough to make room in the row for my boy.  My heart filled again when I looked at this boy that I did not know but who apparently held a great deal of respect and compassion for my boy.  My boy who still has some impaired social skills would make an easy target.  My boy, who still suffers from the choppy speech a severe speech delay will leave behind long after the speech therapist has deemed you able, could easily be made fun of by a more savvy child.  But today, and this year, I see my boy with his peers and realize….who my boy is…is enough.

For the rest of the assembly, as I watched my boy and his friends more than I watched the awards being displayed, I saw my boy sitting with some of the tougher kids in school…and, low and behold, my boy was simply being a goofball.  He was misbehaving a bit but he was just being a typical 7th grade kid and, for this momma, that was just as important, perhaps more so, than the honor roll award I’d come to watch my boy receive.

It would have been enough, knowing where we have come from, simply to be acknowledged for his honor roll accomplishment but, today, sitting with kids that appeared genuinely to be his friends, being a goofball on the honor roll meant so much more.  It meant the therapy was worth every hour and dollar spent.  It meant all the hours of working hard to divert the worry was worth it and every fight with every school that drained me was worth every single drop of grief because it got him to today…a place of acceptance, camaraderie and friendship and it got him to a place of both academic excellence and social acceptance that I thought might never be ours.  Today my boy was simply enough… and, at the same time, he was a whole lot more than anyone could of predicted on any evaluation form we ever received back from a doctor.  Today autism proved to me that, if given the time and patience it deserves, autism indeed moves, it grows and  changes,  and autism breathes with an incredible brilliance that has become more than I ever imagined.  Sparkle On, my friends!

Reasons To Love Autism: Hysterical Moment # 81

I make it through my day by writing notes down on scraps of paper and today was another clean-up-the-hoards-of-scraps day at my house.  Here’s what I came across today.  I’d like to say he was in preschool when this happened but he wasn’t.  He was in fourth when this little event occurred.  His honesty is priceless.

Sensing my boy was having trouble starting his math homework, I tried to help him along.

Mom: Go ahead and write the six to start.

My boy: I can’t.

Mom: Sure you can, buddy.  You can write a six.  You’re smart, my friend.

My boy: No, I can’t.

Mom: Oh, I am so sure you can.

My boy: I can’t, Mom.

And, at this point thoughts about regression and seizures begin to crowd my mind and I wonder if something grave has happened that has stopped this fourth grade child from writing his numbers.  Or, just as bad, has he gotten to the point of refusal because his fear of failure is so great?  I’m definitely beginning to round it off to the nearest disaster but, before I voiced these fears out loud, I decided to hold my breath and calmly ask him what might be causing his inability to write that six.

Mom: What is stopping you?

My boy:  My booger.  I don’t know where to put my booger and I can’t hold my pencil because that booger is in my hand.

Okay, I have to be honest.  At this point I was just trying to maintain my own composure so that I didn’t derail his homework any further.  I let out my breath and tried not to laugh out loud.

Mom: Perhaps in a tissue and then in the trash?

My boy: That’s a good idea, Mom.

And that is when the disaster calms, the boy finally picks up the pencil AND, sure enough, is still able to make a six.

Problem solved for both of us 🙂

An American Child Prisoner of War

For My Grandfather On Memorial Day

There is mostly light filling his life,

He is young, strong, he is American.

A peaceful man, taken from his quiet life of sales in 1944

And asked to defend his country.

Life changes, plans fall, he is from a generation who does not run.

He will not run.

He stands up and is poised to fight for Her.

He lands on the ground, in Europe, fighting…

For his own life.

It is January, 1944

He is captured.

He is a prisoner of war.

An American boy

German-kept month and then months.

Starved until he may not walk again.  Starved until he may not live.

He is an American boy

He will not fall so easily,

He rises from the starvation

He stands again.

Not as straight and not as tall

But he stands because he will not let men of hatred crush him or Her.

He is an American boy

He stands proud.

He sees Europe

By foot

He is marched and marched and marched,

Month to month to year,

Until he cannot move.

He learns to cut hair to improve his standing, to stay sane.

He marches until the starvation makes him fall…again.

They say he will not stand again.

But it is 1945

The war is over

He is free.

An American Boy

The prisoner of war returns to Her.

 

He is skin and bones,

Others stare at him, his protruding bones,

They cannot understand.

He will not leave the dinner table.

He will not waste what he once longed for.

He will not leave the table until each plate is bare.

Long after all have pushed out their chairs and walked,

George will still be sitting, eating, appreciating.

Thankful for the food and careful not to let

One single precious crumb be tossed away.

Wasted like he was in those sixteen months.

Those who have never left the bounties of America cannot understand.

He is free but he is never free of his memories

Never free from his starvation.

Five decades will pass and he will still fear

Not having enough.

An American boy

The calendar says he is 89 and now another war has come.

This time the Persian Gulf.  This time men and women fight.

The new war stirs old wounds

George fights the old battle in his memory

It is hard to tell the difference between what is now and what is memory.

His body is fading

He is fighting the war still.  In the hospital.

He is starving again

There is mostly darkness.

An American boy

Decades have changed him

War has not changed.

He cannot see war again

His mind cannot relive the ache that still breathes

Inside the darkness within him

New prisoners of a desert war are taken

The same and yet different,

They are women this time

With grace and forgiveness, George’s body gives way before he can see

The faces of the new POWs

The faces of women who have replaced him.

He goes before he has to see

Them living the nightmare of his war life over again.

Or, perhaps, he has to go

And be with them.

Lend his strength, His knowing, His awareness

To them

Because only he can know

The depths of what they will need

What they will see

And how, in their mind, they will never stop being that

American Child

Prisoner of War.

POW George Anderson, held by the Germans for 16 months during WWII, passed on March 24, 2003, before he could see the new POWs.  An amazing man and my grandfather.

Kindness Matters

autism sparkles-106

It still happens.

Whether it is my boy grabbing a beloved plastic snake at Michael’s and putting it right in a woman’s face to show her how pretty it is or him angrily displaying his distaste at an unpopular decision I have made, we have faced down the Vanilla People on many occasions.  It happened when my spectrum kiddo was younger and it still happens today when we run across the rude and staring Vanilla People in the world.  The ones who fail to understand autism, the ones who do not recognize autism, the ones whose empathy for their fellow human beings was not engaged when they happened upon us.

I could have gotten angry at them. Though I was raised a Southern girl with fabulous manners, I can do angry and I can do it up ugly when needed.  In those choice moments, when facing down the unkind words and stares from the Vanilla People,I could have lashed out in protection of my boy and let the grizzly momma step in but, honestly, for me, patience is the better answer.

Crazy you say?  Naw, it’s not.  Read on, my friend.  Their is method to my madness.

Patience is mostly not crazy.  Anger is certainly easier but, if you think about it, the patience I am talking about is the same patience I want the world to have for my spectrum kiddo.  The way I see it, how can I ask it of the Vanilla People if I don’t share it first myself?  As the autism ambassador that I have appointed myself to be, I have made it my business to set the example because kindness, understanding, compassion and awareness…BEGIN WITH ME.  I will also add that the most successful ambassadors in this world happen to not be the ones shooting angry words across the aisles.  No…really.

That same level of patience I give to my child, I also have vowed to give to the Vanilla People.

As I catch them watching my child with a bewildered look on their face, I catch their glance right back and proactively remind them, “Autism can be kind of rough.  This is what it looks like.  It’s hard on him too.  He understands it just about as much as you and I do but we keep struggling through it.”  I also add as we are leaving, “Some days can be really hard.”  The proactive words soften their faces and the bewildered face is replaced with that “aha moment” that says they misunderstood what was going on and now they understand and NOW they have seen autism in person and they are sorry they jumped to conclusions.  NOW they understand that autism is a sweet faced child and a kind mom who are doing the best they can.  Now they understand autism is neither scary or ugly.  Autism then becomes a face they are familiar with and, consequently, autism is no longer an impersonal stranger on a news cast or movie screen.  It is the first proactive step I can take to help the world really SEE autism… up close and personal.  And, I’m pretty confident, the next time the Vanilla-People-Friend I have just made faces autism…they will not jump so quickly to judge because their hearts have been opened up to the  very real and kind faces of autism.

That is how I spread awareness.

I cultivate the kind of understanding and compassion I want others to share with my kiddo by softly bridging the gap of both awareness and understanding.  I figure if I am proactive and I spread the message with kind words, the Vanilla People will remember and associate autism with kindness and humanity and, as the days of my child’s life roll forward, the Vanilla People in my community will be open to my child.  To me, that’s a whole lot better than leaving the community at large  with the distaste and ugliness of anger in their face from a mother who simply mirrored the unkindness she saw and who lacked as much compassion as she was shown.  If the saying is true that “You get what you give”, I want to make sure that what I am giving to the global and local community is that same understanding and compassion that I want to have come back to my spectrum kiddo…and…in spades…one Vanilla Person at a time.

The Iridescence of Autism vs The Vanilla People

Image

In life, let’s first get this out in the open and admit, there are vanilla people.  Those people who really love vanilla.  Plain vanilla.  No toppings, no swirls, no syrups or hot fudge, no nuts, and, by all means…believe it or not, no whipped cream.  That is the way it is.  Just. Vanilla. Please.  That is who they are.  They cannot help it.  They are not necessarily bad people.  They simply have not opened themselves up to the radiant and non-vanilla world around them…yet.

Of course I have never been a vanilla girl.  I will take chocolate, coffee, mint ‘n’ chip, butter brickle, chocolate triple fudge brownie, mango swirl, you name it.  Anything but vanilla for me, please.

When it comes to life outside the ice cream shop, autism and it’s sparkly iridescence come up against their version of vanilla people too.  Not everyone likes autism’s sparkles.  Not everyone is comfortable with it.  That’s part of the spectrum journey too.  Believe it or not, some people just want the vanilla version of children and life and those vanilla people will never quite appreciate anything other than their beloved, simple vanilla.  Vanilla people, in their want for conformity and consistency, will never embrace or appreciate the iridescence,sparkle and brilliance of autism.

That is simply a fact of life.

No matter how sparkly and brilliant we may see autism, the vanilla people will never see it.  Although some of us adore iridescence and sparkle, others do not and that is okay.  All I say is, be aware of the vanilla people, know they are out there, know they will never change and just let them go.  Take them with a grain of salt or perhaps, better yet, take them slathered in a thick coating of hot fudge.  The non-iridescent-loving vanilla people will not love the spectrum, challenges, differences or disabilities, nor will they appreciate the crazy wonderful pieces of life a non-vanilla dance can bring.

I learned that I cannot change them but, lately, I have come to think that perhaps the vanilla people have their place.  Crazy thought, huh?  Sometimes I believe that in order to retain the unique quality that is iridescence, it has to be sparse to be appreciated.    Thankfully, we are not in the place where vanilla has gained a majority.  Thankfully there are enough of us exotic chocolate loving souls to keep those vanilla-ites at a minimum and to keep the sparkles special.  The vanilla people still hold their place, they push iridescence away and I think that keeps the world in balance.  Not perfect, you’re right, but it leaves us pretty darn sparkly and perhaps even the possessor of the unique mystery that lies within our spectrum journey.

Autism has its quirkies, it’s definitely hard to define and it kind of sparkles indefinitely.  Not everyone likes their world all bright and shiny and reflective.  It truly takes a remarkable person and a savvy eye to appreciate the iridescence of autism because there are a lot of unknowns, it’s scary, it’s hard to know where it will take you.  Not everyone can be trusted with that kind of brilliance.

Sometimes it’s easier if you look at it from an angle with a partial view, one day at a time with deep breaths in between.  That is the advice I give most parents when they ask me what they should do.  Just breathe and don’t get ahead of yourself.  Today, concentrate on today.  Tomorrow will take care of itself.  Don’t get lost in the sparkle.  Worrying about what might happen next week or next year or six years from now will serve no purpose and will not make anyone’s life more peaceful or more accomplished.  If you have plans next week or next month, pencil them in but, otherwise, don’t fret.  Just breathe deeply and often.

And, because this is about real life, I have to admit this lesson was a hard one for me to learn.  I am by nature a worrier and a fretter.  Thankfully, autism and this life have taught me some good life lessons and coping skills.  I hope you learn this lesson with more ease than I did.  I can see it in new parents who are just starting their journey and I recognize it is how I used to be.  I also know from hard fought experience that all the worrying in the world did not change a thing.  Working hard, breathing deeply and taking one step at a time made the real difference in our spectrum traveling world.  These days, when I feel the squeeze of the anxiety swelling in my chest, I have to stop what I am doing, break it down into small pieces and take a deep breath.  I do this because I know that in small pieces I can do anything I set my mind to.  But if I let too much crowd me all at once, I get overwhelmed.

So, forget about the vanilla people who don’t see the radiance or appreciate the iridescence.  Just breathe deeply, take life’s challenges one day and one single step at a time and know you will get through all of this.  Some days you will even get through it with radiance, enthusiasm and great love for the blessings autism has shared with you.  Honest.  And, just like with iridescence, if you look at it from a different view, a different angle, and if you look close, autism can afford you glimpses of greatness in a magnitude that hasn’t yet been seen.

That is how I feel some days. (Of course, not on the fall apart days because the fall apart days WIPE ME OUT.)

Some days, his autism is like an iridescent radiance…he literally shines in my life and the radiance sparkles before my eyes.  Sometimes the radiance is bright enough to let me see just a glimmer of what he is seeing and that is the essence of the joy and love he shares with me.  That is exactly why I love autism so much.  It changes me and it thrills me and, some days I am able to breathe in his radiant iridescence and it makes me momentarily glow inside too.  I suppose it can be said that my boy brought “glow” to my life.

And, like with iridescence, as the light changes and the child grows, autism grows and changes as well.  Not every moment is brightened with iridescence but that’s okay too.  Embrace the ones that sparkle and know on the fall apart days that the sparkle will come back and is probably just around the corner.  I am so thankful for the iridescence he sprinkles into my life…the one thing I never knew I wanted but am so thankful I have.  The other thing I know is I will never be one of the vanilla people.  I understand their place but I will never ever be so vanilla-ish as to miss the brilliance that has been gifted into my life.  Sparkle On, my friends!

The Oy Vey Moments of Parenting

The oy vey moments happen more often than you’d think… or maybe just more often than I am prepared for.  Those moments when the kids say something that is the equivalent to an emotional sucker punch but, as parents, you have to keep your composure.   As parents, you can’t let them see you sweat.

I am getting older.  I get that and I am okie dokie with it.  I am not pulling my hair out, I am not botoxing, I am not making appointments for facials, I am not pushing anything up or tucking anything else in.  I am okay with me….age and all.  It just is what it is.  I did not have my children right out of high school.  I waited.  I went to college first and then I played the working game for a while.  I had my first just before I turned thirty and I have never thought I was too old.

Lately, I can feel the creaks in my bones a bit more profoundly.  I can see my gray if I put my reading glasses on and there was that moment when I was out running and I mistook the cat for a fox.  In my own defense, I will say it is dark out at 5 a.m.

So, it happened again today.  This afternoon after my kiddos came home.  I should not have taken it as such a sucker punch but, in the moment as it happened and the unexpected words floated out of his mouth, it was hard not to.  My youngest child was being all boy, using his ten year old boy brain, and the oy vey moment was so pronounced that it was all I could do to gather my breath and move on.  He is lucky he is as cute as he is.  His blue eyes have saved him on many occasions before this one.

The Oy-Vey-Moment went like this:

Little Man: Hey, Mom, I read this book today (which is a great line to tell mom since he was the one of my three who had the hardest time learning to read.  He used to carry a book around just to be ‘seen’ with the book even though he could not read).

Mom: Awesome.  What was it about?

Little Man: Well, you see, there’s this shark attack survivor and it takes place in 1916.

And, then he stops.  Then the wheels roll into boy brain motion.  For a moment he is silent as he ponders the thoughts rolling around on the wheel in his boy brain.  Being the seasoned mom that I am I should have braced myself.  I should have seen it coming at me.  I could literally see his wheels turning and I should have been able to see the words forming and brace myself before the comment ever made its way out of his mouth.  I should have.  But I didn’t. I didn’t see it all until I heard it hit the air.

Continuing, he says…

Little Man: Mom, how old were you in 1916?

And there it was…floating into the world and out of his boy brain.  And, he says it with the kind of innocence that means no one any harm.  Kid naivete and the blue, blue eyes are what saved him.  The same explosion of words might not have gone so well for my 15 year old but it was finessed by the boy.

And, while I am catching my breath, my fifteen year old, who gets how all of this works more than the ten year old, says, “How old did he just call you, Mom?” She is my math whiz with the IQ up in the stars and it does not take her long to calculate the jaw dropping facts, “Did he call you 96?”

And I can hear her and she is right but I am concentrating on breathing.  Deep breath in and then exhale.  Deep breath, exhale.  Deep breath.  Exhale.  And quietly, without any sign of gruff, I say, “He did.”  And we move on as calmly as possible, no ripples, with me licking my aging wounds because he is just a kid, a boy filled with boy brain at that, and he knows not what he does.

Age is just a number…right?

Ugghhhhh…..and that, my friends, is the sucker punch of parenting.  No ill intentions and yet an Oy Vey moment nonetheless.  I hope your day is much more sucker punchless than mine :).

The Different Faces of Autism

autisms sparkles-170

One day I think the “experts” are going to decide that the spectrum, being as broad as it is, may have been a little too vague. I think one day, years and maybe decades from now, they will better understand the complexity of autism and perhaps even the causes. I think there are probably various causes because autism carries within it SUCH variety.
I hope they redefine the spectrum as they discover that all of these different forms and faces of “autism”, Asperger’s all the way to severe autism, were actually from different root sources. My son is high functioning now (we have been PDD-NOS, then straight autistic, then Asperger’s) but I have good friends whose children are considered severely autistic and their experience has been so entirely different.
Were the delays and their differing severity from different causes? I know parents who swear they watched “the light go out” after the vaccinations and others who never saw that. I think both parents are right.
Just a thought.