A Note To The Wonder Souls

autism sparkles-2

This little picture encapsulates everything I couldn’t see in the beginning of our autism journey.  These few words breathe with all the lessons I have learned and the myriad of wonders I have come to believe parents of the younger kiddos on the spectrum need to know as they begin to nurture their kiddo on this journey where childhood will present itself at a different pace and in different form.

For the parents of spectrum kiddos who are younger (my son is 13 now), it is so crazy important to realize that a childhood laced with autism still changes, moves, and grows..it just moves at its OWN PACE.  Your child CAN STILL hit the mile stones and benchmarks…but they will do it at their OWN QUIRKY PACE.  I kid you not.  I know it’s hard to see from where you are sitting (because I have sat once before in that dark place)…but don’t give up or lose heart….just be patient, work hard and love them where they are at.

My son is now in REGULAR ED…but that is NOT where we started nor where I was recommended we would go.  I will tell you honestly that I couldn’t even see that possibility at the time but we set our goals high and worked hard.  It may not happen for every child but it happens…it can happen so DON’T lose heart all of you very sweet wonder-soul parents!   Set your goals high, love them deeply, support them with every fiber of emotion you carry and work hard…and then sit back and watch them blossom as they were meant to be because autism is a wonderland full of more magic than I every knew existed.  Call me crazy but autism wows me…with every single sparkle I am privileged to be part of I realize there is magic in that there spectrum…if you let yourself see it.  Because the very worst thing you can do on this spectrum, the only real wrong thing, is to not believe your child CAN.  Never ever let yourself give in to “can’t” because if you believe you can’t…you’re right and that is a much larger failure than anything autism can ever throw your way.

So, believe in your child and have faith in yourself and in those moments of doubt….simply sparkle on, my friends.

What If We All Believed?

autism sparkles-56

What if the whole world 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.

The Miracle At The Church In The Village With The Air Guitar

autism sparkles-53

Yeah, you’re right, the air guitar is not often invited to church.  Especially on the eve of Christmas Eve when special music and invited singers are noted in the bulletin.  A little more ceremony and a dash more solemn are both on the schedule during holiday Sundays when visitors are in the house of God and everyone is feeling His presence more deeply as the celebration of His birth is near.

The funny thing is that right during the fancy music is when it all happened.

The Miracle.

I’m not kidding.  It might actually be one of the very best things I have ever watched unfold…in my whole life.  In a world that breathes with intolerance and in a world that spends an excessive amount of time in search of perfection and conformity, a display of absolute imperfection stood right up in the front of our church without any hint of apology given or asked for.  AND I MEAN… RIGHT UP FRONT.

I was raised in a church with a label.  A lot of them have them and it’s not a bad thing but labels can be confining.  Baptist, Catholic, Jewish, Methodist are just a few of the labels that come with separate rules the members have to follow depending on the expectations of the label they sit beneath.  Not bad, like I said, just confining.  Today I attend a church without a label.  Not crazy stuff at all just not specifically labeled.  It looks a lot like the Baptist church I was raised in and they act a lot like that too but it’s not labeled that way.  People truly “come as you are” and some people raise up their hands in worship and some keep them down low.  You want to sit?  Sit.  You want to stand? Stand.  You want to raise your hands up and lock your elbows in praise? Go for it.  There are general rules and people don’t interrupt the pastor but this room of worshipers doesn’t hold the rules in stone.

And, truthfully, maybe that’s why the miracle happened.

It was right after a regular hymn played and a special holiday performance was just setting up for their song.  The pastor introduced the couple and told the congregation they could sit while this couple sang but could also feel free to stand or kneel or express their praise how they saw fit.  He was sure we would not sit for long because he assured us this music was pretty soul stirring.  I don’t get that stirred.  I am pretty self conscious that way.  My hands don’t raise up, I don’t kneel down and I certainly don’t step out into the aisle to praise God.  Good or bad, I was raised in a quiet, non gesturing church growing up and that is kind of instilled in me.  Nonetheless, I appreciate those that are freer in their worship than me.

A few quiet moments later, as a seated congregation looked on and the woman’s voice began to be heard for the first time, the miracle happened.

Did I mention the whole congregation was seated?  The pastor was right, it was some soul stirring music and not two breaths into the woman’s song, a boy in the very front row, actually front and center in the entire church, stood up.  He is a very tall boy, actually a young man nearing twenty, and there was no way you could miss him.  Right there, not five feet from the couple  singing, he stood up tall and with both arms fully extended and animated, he played his air guitar.

Let me tell you, the boy had skills.  This was not his first round on air guitar.  He was a pro at air guitar and he stood there for several minutes and he played with his whole heart.  He never turned around to see if anyone was watching, he never asked if it was okay, he simply stood and played his air guitar.  He was praising God in his way, appreciating the beautiful music and sharing with us all his own very well played air guitar.  His gift to God.

At first I got nervous.  As a mom of a special needs child, I have had to run interference with my own child in church before.  I know the instant moment of panic, the cringe worthy moment, as your child draws the attention of the whole congregation when their behavior runs against the grain.  The boy who stood up is more profoundly disabled than my own son and I immediately went into protective mom mode.

But, here’s the thing….after my momentary cringe faded, I realized this was not one of those moments.  This was an entirely different kind of moment and it was even a moment like I had never witnessed in my life before.  You see, not one person hushed the very tall young man standing up in the front of the church.  His parents, in the very front row too, did not force him to lay down his air guitar and sit back down.  The pastor of the church with no label, standing before the congregation and watching most eyes land on this boy, did not use his authority to demand obedience and conformity.  I could see the two women in front of me point and smile but they smiled with joy on their faces and not disapproval or discomfort.  In another moment, without a sound being heard except for the singer, I began to tear up as I realized, this was a miracle moment.

They loved him.  They accepted him.  They believed in Him.  No matter what, they were his village and he belonged.

And the boy played on.  And no one in the whole church stood up.

An entire congregation came together in love, in those moments, not only to worship God but also to love their fellow man, perfect and imperfect, with tolerance and equality for all.  They came together, as a village, to be their brother’s keeper, to support other families unlike their own and to love everyone as God teaches, right where they are at.  I think God was there too.   If I were God, I would want to be there because I believe this is the kind of church God envisioned.  A place where love, acceptance and belonging are for everyone in the village.

The boy, after a few minutes, sat down and, a few minutes later, he stood up again.  This time he raised his hands up high in praise, among all the seated worshipers and he worshiped God in his own way and that was okay with everyone in that village church.  Who he was, different and yet equal…was perfect.  He was simply God’s child.  In another moment, he raised one hand high and shook his fist with his other as his body became overwhelmed with his love of God.  In another moment, he sat back down.

Beauty and goodness were defined right in front of me, in the front row of a simple church without a label where a young man, one of God’s equally valued children, brought an unexpected air guitar to his church on the eve of Christmas Eve.  It was truly one the most beautiful and spontaneous moments I have ever experienced.  As a mom of an autistic child, I have seen enough unkindness and intolerance to paint an entire town black.  Perhaps that is why goodness, kindness and the embracing of differences warms me so.  It’s not an everyday thing, not everyone is capable of it but in a place that breaths with tolerance and acceptance of differences, these things can and do happen.

And that is when I realized that in the Sparkle Village, on the virtual street I share with the wonder souls,  where we paint our boats with stripes and polka dots and we sit each night and unwind with parents who are kind and tolerant and accepting of different, where it is okay to not conform to perfect and it’s okay to make mistakes and not hit benchmarks at the appointed time, this is the kind of place, church or not, that us parents dream of.  The kind of place where our children are wanted, loved, embraced, tolerated by the whole village….for being exactly who they are…perfect or not.  This is the kind of loving world our children, and we as well, want to be part of.

Thankfully, this church is already a reality.  Inside this very simple church, in a simple and small town where I live, a group of people stood up for a child who was not perfect at all and they became this miracle.  I witnessed an entire church tell the world, and each other, that all kids matter, all kids are equal and different is not less.  Different can even be spectacular when you let it because it was absolutely spectacular that morning when he stood up and he played his air guitar while the church watched him show his love for God and they loved him right back.

That is what I want.  Every single child deserves a village that believes in the deepest part of their heart that perfect is not best and different is not less and air guitars can make our lives better if tolerance reigns supreme.

That is what I want.  How about you?

Snickerdoodles…the very best ;)

Yes, we bake :).  A lot.  After our very quiet morning, I made these snickerdoodles for the kids.  I love it when the house smells good when they walk in after school.  Seemed only right to share the recipe!!

Snickerdoodles :).

1 cup margarine
1 1/2 cups sugar
2 eggs
2 3/4 cups flour
2 tsp cream of tartar
1 tsp baking soda
1/4 tsp salt
3 tablespoons sugar and 3 tsp cinnamon, mixed together in a bowl

Cream together sugar and margarine.  Add eggs and blend well.

In a separate bowl, mix flour, cream of tartar, baking soda and salt together.  Add to creamed mixture and mix well.  Shape dough in one inch balls and roll in the cinnamon mixture.  Place 2 inches apart on an un-greased cookie sheet.  Bake 8-10 minutes at 350 degrees :).
Enjoy!

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.
*”Stable”.  That was the word he chose.  I have changed nothing in his wording.  I was more than a little shocked by this statement, so I decided to ask more questions. *
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 so deep or insightful …so this opening up and this responsive observation truly knocked my socks off and soothed my heart ♥.

Sandy Hook: The Sudden Smallness Of Autism

Mississippi Sky

My brain is swirling.  Of course, like everyone, the feeling of shock still rules my head and the hollowness pervades my heart as I try to come to understand it.  I know only those twenty six families can truly understand the depth of the this staggering loss but I also believe everyone of us lost a piece of our hearts that Friday morning.  I know I did and I have a feeling it’s a piece that never comes back.

In all of this, I am not angry but what I am is confused and I have also become a mom on alert.  Alert and concerned that something as innocent as autism could become a casualty in all of this.  Just as we are recently gaining positive awareness in order to help innocent kiddos who are in need, an irresponsible reporter goes off half cocked supported within a national forum and breathes its fragile name amidst the blackness that rose up in Newtown, Connecticut.

Before this happened, back when autism first entered our life, I thought autism was immense, ginormous, overwhelming and even mythic in some moments. Mythic because I could not believe it was happening to my boy.   I thought autism was big because it was so much more giant than I could understand or wrap my head around and it felt as though it was even bigger than me and my boy and the doctor combined.

On Saturday that changed.

I’d like to say it changed on Friday but, for me, nothing sank in until Saturday and Saturday was when my jaw fell open wide.  That was the day I heard a reporter put the autism wrapper around the Sandy-Hook-nothing and cloak him in autism.  I won’t write his name or glorify him here because he does not deserve that so I will simply call him the Sandy-Hook-nothing.  Noted but not notable because if notoriety was what he searched for, he will  not receive that from me.  I know his name but I won’t write it.

I was floored when autism was thrown at the S-H-n as though someone thought they could somehow offer up a quick excuse, an explanation for his despicable act.  And then it multiplied when others started to bat around the rumor as they passed along the same irresponsible gossip as truth.  Incidentally, shame on you if you were one of them.  Let me be blunt and tell you I am not okay with that. Not only was it wildly irresponsible but it also goes to show how much you are misinformed and also how much you don’t understand about autism.  C-l-e-a-r-l-y….what happened in Connecticut is too big to be tidied up with a one word explanation. And, that’s when it happened.  Autism suddenly began to feel small for the very first time.  The autism that once felt big and overwhelming began to pale when it stood up beside the S-H-n.

Folks, let me assure you if you don’t know this already, this is NOT what autism looks like.  Whatever the Sandy-Hook-nothing was, whatever drove him to such depths of rage and lack of empathy, whatever made him kill with such venom and recklessness…well…I promise you, it was a whole lot more than autism.  And, let me get ahead on this one too and say it’s not any kind of Asperger’s either.

What went on in the elementary school is not what autism or Asperger’s look like.  It’s just not.

I have been around all those “A” terms for the last decade, plus a few odd years thrown in from my teen years when I worked in residential treatment facilities with kiddos of varying disabilities,…long before autism ever entered my own home.  Long before I had any inkling that autism and I would become quite involved with one another.  My boy is all of those “A” words.  He is not only autistic but he is also Asperger’s and there is not a hint of violence in his essence or his actions.  He is loving and kind and he has empathy beyond his years.  His friends are very much the same.  Kind, sweet, loving.  As early as his kindergarten years(he is thirteen now) his kindness began to roll through our village. He and I would wait each day for his sister at the bus stop.  While we were waiting for his sister, if he heard a baby fussing,  he would attend to the babies who were crying.  The mothers were often busy chatting and did not notice so my boy would step in.   My boy would locate lost pacifiers and blankets and bottles and notify mothers that though their baby had been sad, he fixed them and made them smile.  Even today, at 13, if I so much as sneeze he comes to check and make sure I am okay.  Sure, he is autistic, he is Asperger’s, and it is nothing related to what you saw unfold in Connecticut.

Autism, as big as I once thought it was, is much too small to explain the enormous darkness of the S-H-n.  Too, too small.  No amount of autism, no matter where on the spectrum you look, can begin to explain the Sandy Hook nothing.  Whatever that boy was, if there was a disorder involved, I promise you his landscape was broader than autism could ever fill.

Do you really kid yourself into believing that something like autism could be used to define and explain something as hideous as the Sandy-Hook-nothing? Seriously that is NONSENSE.  And, just that quickly, I am faced with the sudden smallness of autism.  Autism is too small to explain away the Sandy-Hook-nothing.

The violent rampage you seek to explain by rushing to label it will not be explained so easily .  Slapping any of the autism spectrum terms on to it is not enough to explain what that boy did.  Autism spectrum disorders are too small for that.

The Sandy-Hook-nothing goes deeper and much darker than autism could ever begin to explain.  I wish it was that easy.  That a simple diagnosis could cover something so immensely unfathomable as what befell such a lovely elementary school who had taken such measures to protect those little ones but autism is not big enough for that.  It might make a country rest easier if they could name it and file it away but that’s not going to happen this time.

Autism is too small.