wisdomfromthesisterhood

The Sisterhood is a place to bring your cup of coffee to. Heck, bring the whole pot :). Sit down, relax, and fall in for a while. No divas or meanies allowed. It's about boy brain, kiddos, food, one crazy labrador, autism and a cat in recovery from a back tire incident. Oh the places you'll go :)

What If We All Believed?

autism sparkles-56

What if the whole world came to believed that autism was NOT a mistake, not something to be avoided or dismissed or grieved? That autism and its kiddos are one of life’s greatest gifts. That autism is really a beautiful, breathtaking mystery, entrusted to a few wonder souls, just waiting to be unraveled and embraced because the brilliance within these children is unmatched and the world is just waiting for the incredible gifts these kiddos have to offer. That’s the world Autism Sparkles lives in and we are just trying to spread the message. Autism is brilliance…wrapped in a mystery…just waiting with patience, love and devotion for the pieces to come together.

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Reasons To Love Autism: Moment # 72

Interesting insight to my son this morning and I had to share. At times on the weekend, for one of the days, I will skip meds. We don’t have a choice during the week but, since our meds are an appetite suppressant, having a good food day to boost his weight is important too… especially when we are just hanging at home. This is a question I have never asked him before.

Mom: Would you like to skip meds today or take them? It’s the weekend and we can just hang out today.

My Boy:   I’ll take them.

*I was a little curious that he would choose them so I continued.*
Mom:   Why would you choose to take them if you don’t have to?
My Boy:  Because it makes me stable.
*I was more than a little shocked by this statement, so I decided to ask more questions. His exact wording. I have changed nothing.*
Mom: Do you feel different if you take them?
My Boy: Naw, it just makes me not goof around and be silly.
Mom: Do you not like that?
My Boy: I like it better when I am stable and not goofy.Our speech is stills somewhat impaired even at 13 and we are not often insightful …so this opening up and this responsive observation knocked my socks off ♥.

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Embracing The Nasty Booger

I honestly don’t remember anyone saying life would be easy.

Nope, no one did.  Not once.

Then again, as I recall, no one ever threw up a yellow flag that cautioned we would each find moments in our lives that would be entirely black  either.  No one said it would be so dark that sometimes you won’t even be able to see the road.  Or that, for some,  life would give you twice as much as your hands can physically hold.  Or that sometimes, after life has dealt you some hard blows, it will chuckle as it throws you a few more.  Life has a sense of humor like that.

Some chapters of life, as my son would say, are just nasty boogers.  A title he gave to his fourth grade teacher during one of his own dark moments and a term that has remained in our family ever since.

The undeniable truth is that there will be darkness and though life dishes the nasty-booger-moments out, life doesn’t offer up simple answers or give us the light we want when we want it.  There are those darker days when the answers sit under the shadows and only time and struggle will unveil them.  The kind of time and struggle that is never easy, fun, filled with giggles or even warm.

Time can be slow. Time isn’t always kind or comfortable.

In the darker places, the best you can really do is keep trying to move forward based solely on instinct, hope and love.  Some days you will hold on by a thread.  Some days you will simply hope the inner voice you sometimes hear will show you a bit of grace and keep guiding you forward, one baby step at a time, through the blackness.

Thankfully, and a thought that’s worth holding onto during those dark-nasty-booger-moments, the moments are worth it.  It may not seem like it at the time but, later, they absolutely are.  The blackness is where the strength grows and where character is born.  The blackest moment holds the deepest strength.  That barely-holding-on-nasty-booger-black-moment is the very moment when you get to see who you are because this is the moment when the ‘who’ you are evolving into begins appearing, growing, building.  Growth, for darn sure, ain’t easy and it’s not something everyone does well or with grace but, eventually, it’s a good thing.  It’s scary and lonely and full of uncertainty and, it’s good too.

It truly is during these frightening, hunkered down moments when all the clarity is muddied and you think you are breaking, when you step away from the crowds, the comfort and even the well traveled path and you touch upon the bare bones of who you truly are.

Dark moments are when we stretch.

In that uncharted territory, in the pain and the unknown and the hurt, is when we get that glimpse of who we really are.  This is when emotional muscle and back bone are layered into the “who” that we are.   And though there will be times when you want to give up, give in and wave your white flag in defeat…don’t.  Hang on longer, hunker down a little lower because who you are becoming matters.  Meandering away from shiny, sweet and perfect and evolving into seasoned, useful and wise is not easy but, the honest truth is, shiny, sweet and perfect is also shallow and useless.  It takes the nasty-booger-moments to grow the strength and wisdom this life needs us to have.

I see the friends in my circle who have been roughed up by life and these are the ones I love most.  Though they have weathered their share of darkness, they carry the kind of light and grace that shines brightness on the darkest of days.    These friends who have weathered the darkness and have made it through the nasty-booger-moments are the ones I pull myself nearer to.  Their wisdom and warmth is sincere like no other and their light soothes the darker days.  We may not like the nasty-booger-moments but they sure make the world, and our circle of friends, a better place.

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A Boy And His Girl: Profound Trust

This is from many years ago but I was struck by how serious they both were in this moment.  Completely enthralled with one another.  He was just four years old when the kids and I drove from Florida to Georgia to bring her into our life.  She was just eight weeks old.  She is his friend, not just his dog.  She is the only girl he allows into his world because, at ten, girls still have big time cooties.  This dog is a girl but she is an equal and he treats her as such.  I only wish I was sitting closer so I could have heard what they were speaking of.  The important things that boys confide only in their best dog, their first true confidant.  I love these two.  They are devoted, connected and committed to one another.  Maisy is his friend and he is her boy.  Nothing more profound in a relationship than that right there.  This is what total and profound trust looks like.

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The Winning Loss: Beyond The Black and White

Until Saturday, it had been a good year for my boy.  He has become the goalie king.  No doubt he has worked hard, been bruised up, shed some blood, never complained and hit the ground hard on more than one occasion diving for the ball and proving his skills.  He has earned his spot in the goalie box.

With that said, I have to be honest and say our little team has had a rough go of it.  We started out with twelve players.  One quit, one moved, one broke his arm and one dislocated his elbow and this all happened in the first half of the season.  Our team also boasts no aces on the roster.  Every boy is average to below average in their skills.  I can talk about below average because that is truly where my boy was before he found himself thrown into the goalie box for the first time after our goalie dislocated his elbow and no one else wanted the job.  But, truly, despite our disadvantages, our boys have stepped up.  They have clung together and grown as a team.  They have played without enough to field a full team every game.  They have played games where they have lost by nine goals and yet have never given up.  They have stood together and they have fought…all season long against teams that have year round ace players and against teams who have enough players to use substitutes.  We never have substitutes.  Every player plays…the entire game.  And, for the most part, even when they lose the game we are such proud parents because we see how far they have grown in their skills this year and as a team.  No parents of any team are prouder than the parents of our team.

It showed every single Saturday…until this last Saturday… when the bottom fell out.  Completely out.  So far out that there is hole showing daylight where the bottom used to be.

My son missed his first practices last week.  He was sick all week and out of school.  Mother Nature’s moodiness brought extreme changes between cold and hot weather and added in some really cool night air.  That is all it takes to send this once RSV baby back to the nebulizer and inhaler.  On Tuesday, we almost made a trip to the hospital.  He pulled it out just in time for Halloween but then relapsed on Thursday.  Friday he went to school and on Saturday he begged to get back to his team.  We all know that missing one boy can mean a forfeit or a more difficult game so our boys are loyal to the team.

All season, he has been the hard core, scrape your knees, dig up the grass and dive in hard for the ball kind of goalie so the boys expected a lot from my son.  We are in last place in the league and yet my son is scouted by club coaches.  We play hard but we still have some rough edges.  The team we played Saturday was number two in the league and they had one player, #7, who was really the entire team.  If he gets the ball, he scores.  It is that simple.  He is an all year player.  He truly rocks.  I won’t be surprised if I find him on a professional team in a few years.  He is that good.

The first quarter, my son came in with a weak performance and after #7 ran past our offense and our defense, he rolled right into the goal area and shot three above my son’s head right in a row.  They were awesome goals and you could see it in my son’s eyes how bad it felt.  It’s happened before.  We’ve failed to block goals but this was out of his league.  Even though we have been approached by club coaches and told we are the best goalie in our league, #7 was beyond us.

After a fourth goal was missed, this crazy thing happened.  Things started being said and they were not said quietly.  And they were not being said by the other team.  They were being said by my son’s teammates.

“Can’t you take him out?”

“Can’t you replace him?”

“Man, coach, we need a new goalie.”

It was heartbreaking and a few parents were vocal, loudly vocal, that this kind of talk was not okay.  Nonetheless, my boy kept failing and the comments kept flying…from his team.

At the half time, my boy traded goalie jerseys with the loudest complaint maker of all so coach told the complaining boy, “You think you can do better?  You go be goalie next quarter and you’ll see how tough it is when your defenders all shut down on you.”  And, sure enough, three goals were scored on that boy within the first three minutes and my boy, I am sure, was happy to be running the field….and out from under that pressure and scrutiny.  One more goal was scored and then the new goalie grabbed his hand in pain so he could be taken out but he was well enough to be put back in as a defender.  Sure enough and without complaint, my boy put his goalie shirt back on and went back to his box.  He knocked down or caught every goal that was attempted after that.  He even shut down #7 on every shot he tried to make.  He even put #7 into the dirt once when the scuffle erupted over an incoming ball.

It was a tough game.  Our toughest yet and it wasn’t tough because we lost.  We have lost before.  We have even lost by big numbers before.  What made this loss cringe worthy was watching the boys turn on one of their own.  My boy has been the “man” all season.  He has held his own throughout the season.  In one game, when forced by the ref and AYSO rules to remove my boy one quarter in a game, coach asked the team, “Who wants to be goalie and step in for a quarter?”  The team’s response was, “Why can’t he stay in?” I don’t blame the boys.  It’s a pressure position.  The goalie is either the hero or the scapegoat but, thankfully, my boy’s backbone is strong.

I told him sometimes what we learn in a game is beyond the score, beyond winning and losing, beyond the black and white of life.  Sometimes, what we learn is sportsmanship and loyalty and the age of ten is a good time to be schooled in their  importance.  This time, I told my son, what he did was more important than any game he will ever win in his lifetime.  No matter how unkind or defeating the words were from his team mates, he was loyal.  He never once made excuses or complained.  Not once did my son shout back or rebuke his teammates.  He stood with his team and his coach and demonstrated loyalty and sportsmanship throughout the entire game…even as his teammates were throwing him under the bus.  He did not fake injury to be pulled nor did he refuse to go back in for the fourth quarter.  Not for one moment did he shirk his responsibility to his team or to his own integrity.

I told my son I have never been prouder of him than I was on that day and during that tough game because it truly showed his own character.  Life and soccer are not about whether you win or lose but rather how you play the game.  And, hopefully, he taught his own team that a team stands together, good times and bad, but never ever does it abandon one of its own.

EVER :).

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The Babies In Crates No More

This was too good not to share.  This was what my son on the spectrum had to say this morning, our first conversation this morning!  I am thinking it may be a long day for Mom :)..

My boy this morning: “I used to think babies came from crates. Not wooden ones, Mom. You know, the plastic crates.  I also used to think babies came out of their mom’s mouth.”
Mom: “Where do you think they come from now?”
My boy: “I don’t want to talk about that.”

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Reasons To Love Autism: Moment # 23

Everyday my boy who is supposedly “disabled” teaches me tremendous lessons.  Language does not come easy for him and he does not volunteer a lot of information so where you, as a parent, might be able to simply ask questions and get a whole diatribe of what went on in your child’s day, I have to go through a mild interrogation.   Inside these mild interrogations, I learn a lot and, if i am lucky, he leaves me speechless.

It started like this:

Mom: How was your day?

The boy: Good.

Mom: What was the best part?

The boy: I didn’t get in any trouble.

Mom:  Okay, that is what didn’t happen now can you tell me about something that did happen that made your day good?

The boy: The boy who sat next to me at lunch ate a fly.

Mom: How did that happen?

The boy: It was in the rice.

Mom: Did you eat rice?

The boy: No, he had cold lunch.

Mom: Which friend was this?

The boy: I don’t know his name.

Mom:  Aren’t you sitting with the same friends?

The boy: No, I was sitting at a different table.

This is where mom gets a little nervous because he is not sitting with the same boys he was with at the beginning of the year.  The safe boys from the elementary school we attended.  We are in seventh grade now and the social ramifications are more immense and I worry he will be targeted or bullied or made fun of and I appreciate the sameness of our lunch crowd because I know with them he is safe.  So naturally my radar goes onto high alert and I ask more questions.

Mom: What tables do you sit at now?

The boy: Any table where there are only boys.  Just boys, no girls.

Mom: And you don’t know the people you are sitting with?

The boy: No.  They are boys.

Mom: You sit with people you don’t know?  Why buddy?

The boy: Mom, I have lots of friends at lots of different tables.  I change tables so I can see them all.  How could I know all their names?

And that is when he knocks my socks off.  In my mind’s eye, I am worried he is the friendless boy who moves from table to table but, in his eye, he sees that everyone is his friend and he is trying to move from table to table to see different people.  I am not sure if he truly has devoted friends like you and I might define them but, in his definition, he has a lot of friends and I like that.  I love his eyes, I love his view of the world and because of his grace and who he is… he teaches me the big lessons, the really important stuff.  Love that boy.

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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.  Has he gotten to the point of refusal because his fear of failure is so great?  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 in the trash?

My boy: That’s a good idea, Mom.

Problem solved for both of us 🙂

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The Autism Sparkle

I call this moment my “number one reason to love autism moment” because, truly, it was the first.  This was the first time I realized there is some crazy magical stuff inside of autism and just when you think you understand it all, it will knock the wind out of you.  Yeah, in the beginning, autism is every bit of 100% scary and overwhelming and your moments of hiding in the bathtub become more plentiful as you try to hide from the thing you don’t understand and the thing that is slowly taking over your life.  It is either a dark pit to fall into or to pull yourself out of.  In that very beginning, there is no light, there is no positive and, clearly, there is no magic or wonder to be found.  It is mostly black and sopping wet from the tears that seem to be continually clouding your eyes and racing down your face.  And no, in those early days, there is no way to stuff down those tears because there is no happy place to hold on to.  There is only  black and wet.

And then it happens.  That moment when the autism sparkle sneaks up in the middle of the wooden blocks you and your son are playing with and you don’t even see it coming.  You’re all hunkered down in your blackness and the slipperiness of your sobbing because, yes, you are in a continual pity party and you don’t notice it until the sparkle wallops you hard and leaves you stunned.

Autism can do that to grown ups.  It can reduce you to this pitiful mess until that moment when the spark and the sparkle rise right up into your face so that you see it for the first time.  That’s when you stand back up, crawl out of the black pit and realize there is so much more to see outside the blackness if you open your eyes.  In that sweet moment when your eyes do finally open you get that first beautiful glimpse of the crazy magic sparkle that tells you to hold on to your hat because autism is going to be a wild ride.  As I discovered, it is so much more than you understand and sometimes the ‘sign’ you’re looking for will start as one tiny spark.

That’s where my son and I were when it happened.  He was playing blocks on the floor in our Ohio living room as the snow fell outside and the fire roared a few feet from us.  It was one of those profound moments that etches itself forever into your memory so that the details feel like yesterday. I’d like to say we were playing together and enjoying a precious mom and son moment but, really, he was stacking the blocks and I was trying to be with him.  That is how autism rolls.  Socializing, pretend play and together play are just not our best skills.  Side by side play and tolerating the existence of someone else is the kind of play we were involved in.  That morning, he was tolerating my existence near his blocks in the living room with the fireplace when it happened.

I remember him stacking the blocks and grunting his sounds that morning.  He was, according to all the bench marks, non verbal.  He made sounds here and there and grunted a lot but words were simply a dream we still longed to hear. Grunting and stacking and then stacking and grunting.  It was a bit on the monotonous side but he was at least interacting with the blocks and, for us, that was a step in the right direction.  So I watched him stack and I listened to him grunt and I thought of the other things I could be doing.  I thought this was me being present but, as that sparkle stood up in front of my face, I realized I’d been anything but present on that floor.  I had mired myself into my own frustration and dreaming about all the things I did not have until that sparkle stood up in my face.   I was so busy getting lost in the blackness, I wasn’t seeing the forest for the trees.  I wasn’t seeing the autism right in front of me because of the autism that surrounded me down in the black pit.

I almost couldn’t see the autism sparkle because of the blackened and wet wall of autism that I was letting take over me.  Yes, he was stacking and grunting.  He was.  But, when I came out of my own black pity fog, when I really looked at him, I realized he was counting the blocks as he stacked them and he was saying the words, one to ten, as he stackedBecause he could not enunciate words well yet, his words were hard to catch and I had truly missed them.  Autism is sneaky and quiet that way.

He was counting to TEN!  If I listened closely, he was saying the words!  He was speaking in a whisper and his words were not enunciated perfectly but he was saying them.  He could not speak and yet he was counting to ten!

Sometimes if you blink you miss the good stuff and I almost missed it that day.  That day I got the wind knocked out of me and that moment was literally a breath stealer.  I let out an audible gasp as I reached for the phone to call my folks and tell them about the sparkle in my living room. That was the moment when I threw the black and the wet out into the snow and realized how much my own pity party was crowding my ability to see my son clearly.

That is the moment when the sparkle opened up another side of autism to me that I had never understood.   If you choose to let autism be a game-ender then …well, it will be.  Game over.  But, if you choose to open your eyes to the sparks that are there, you can take those sparks and build on those strengths until they sparkle right out loud.  The sparkle didn’t mean the autism game was over and we had won.  Not a chance.  It didn’t mean my boy was suddenly cured.  It meant there was hope and it meant that autism is a huge mystery and if you check out emotionally, you may miss the very moments that are the mile markers of your journey.  In every child the strengths are there but you have to look for them.  They won’t always show up as a prodigy.  Sometimes they just peek out for a second and you have to be vigilant in your observations.   I guarantee you there will be NO neon signs announcing skills.  I promise.

After that day, I decided autism might just be the most scary brilliant thing I’d ever come to know in my life.  There could be so much radiance sparkling just under the surface if you looked closely.  I vowed right then we would not seal our fate because of the lack of expectation others held for him  and I would never again hand him over to the dark side of autism that gave up before it ever got started.  Truthfully, just because you can’t immediately see the skills or the ability on the popular bench mark day…doesn’t mean it’s not there.  It might just still be forming, more slowly and more thoroughly because, sometimes, that’s how autism is.   It has its own calendar and sometimes it runs s-l-o-w-l-y.  From that day on, I was all about the sparkles and making sure I was open to every one that came our way because if I was open enough to see the autism sparkles, I could build up every weakness I found.  And from the bottom of my sparkling heart, I will tell you the greatest gift you can ever give your child is to keep your own eyes peeled because you never know what sort of surprise might happen your way and you have to be ready for it when it comes :).

*the picture used is not my own.  Please let me know if it’s yours so I can give credit :).

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The Boy and the Butterfly

Yesterday was not one of my boy’s better days. The trip to the pumpkin patch and that stint in the Halloween Drama Zone did not do him any good.  Nonetheless, the butterfly saw goodness and light in the boy and took pity on him.  This butterfly must also double as the Boy Brain Goodness Fairy and she must have sprinkled a little butterfly fairy dust on him because after this butterfly landed on him, he seemed to become a little more sane and his brain seemed a bit more engaged.  Thank you Boy Brain Goodness Butterfly Fairy.  You made our day just an eensy bit brighter!…and you may have saved the boy altogether :).

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