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 :)

Some of you.

Autism Sparkles

autism sparkles-184I’ll tell you right now, this one has not been easy to write.  Hemingway, with whom I have a love/hate relationship, suggests writing drunk and editing sober and it’s gotten  bad enough that I’ve considered his thought but I don’t drink so even Hem didn’t help this time.  It’s such a crazy struggle when you know what you feel and what the story sounds like in your heart yet you can’t place the words into a readable order that makes the kind of sense you’re shooting for.

It’s hard when you’re writing about childhood friends.  I come from this quiet little beach town, south of Santa Barbara, and it’s not at all a fancy town like S.B. but more of a sleepy beach town.  Plain town.  Small town.  Growing up, there were only 8,000 people in our town with little stores called The Sunshine Shop and Ralph’s Grocery as well…

View original post 1,474 more words

Advertisements
Leave a comment »

Settling In To The Land of What If….?

Autism Sparkles

autism sparkles-147

IEP meetings are not my happy place so it almost goes without saying that transition IEP meetings are that same kind of not-happy-place for me but to the exponential power of something like at least 68,000 (if you want to know the truth).

Transition meetings mostly make me crazy because you are trying to extract the hard earned knowledge out of the brains of Team A and somehow magically transfer it to the brains of the new Team B in a manner that leaves the child supported so that, hopefully, the transfer is seamless…which almost never happens because that transition process is fraught with loop holes because magic is kind of lacey like that.  Transition meetings also tend to not be a happy place for me because the last time we had a transition meeting, elementary to middle school, the IEP meeting turned all kinds of  upside down and sideways…

View original post 1,330 more words

Leave a comment »

How Adam Sandler Saved Ronald Reagan

Thank you, Adam Sandler, for showing such grace to my boy.

Autism Sparkles

Section of the Berlin Wall on display at The Ronald Reagan Presidential Library. Section of the Berlin Wall on display at The Ronald Reagan Presidential Library.

The truth of the matter is that autism is a lot of things.

Autism is brilliant.

Autism is sparkly.

Autism is amazing.

Autism is a balancing act.

Autism is compromise.

And, some days, autism can be hard.

Communication, on this spectrum, doesn’t always come easy.  I have three children and my spectrum kiddo’s brother and sister connect as though communicating were as natural as breathing.  Autism is not like that. Connecting is anything but easy.  For my spectrum kiddo, communicating can be more like choking. Unnatural, garbled and labored, and not at all as easy as breathing.

At eighteen months, with my spectrum kiddo, there was no turn taking or ball rolling back and forth because he could not fathom why he needed to be bothered when he’d rather play alone.  At two, while other kiddos were…

View original post 1,784 more words

Leave a comment »

Run, Josh….RUN!

Pretty. Darn. Miraculous.

Autism Sparkles

Josh

Today, Wonder Souls, is  a special day.

Truly, a spectacular day by anyone’s measure and let me say, first off, this is not an autism related post.

Once upon a time, back in 2009, a young man was in an accident.  A bad accident.  So bad was his traumatic brain injury that he had to be put in an induced coma for quite a while.  When they took him out of the coma, the damage was significant.  The boy had to relearn a LOT of things.  Actually he had to learn everything all over again.  Walking, talking, feeding himself.  Nothing was easy.  Even after six months in a rehab facility, it was still hard and he had much to learn and much work to do.

Here’s the video of Josh.  It’s nine minutes and worth every single minute.  Especially today!

Lucky for Josh, he comes from this amazing family.  Back…

View original post 347 more words

Leave a comment »

Autism: The Truth Rarely Mentioned

Autism Sparkles

Blog 52

Road weary from the ride to Disney and hungrier than I can ever remember being as an adult, our party of six quickly descended upon the closest restaurant we could find near our hotel.  We were fresh off the road, a nearly three hour drive mixed in with the joy of Los Angeles traffic, when we finally sat down at the corner table. I had not been sitting for long when I noticed all twelve of them sitting at the table beside us.  They were noisy, as any large group would be, but it was more than their noise that caught my attention.

The Table of Twelve was familiar to me and, at one time in my life, they had been my people.

I will freely admit I am not quite old but I am not excessively young either.  I am thankfully old enough to be well seasoned and wisened…

View original post 2,003 more words

Leave a comment »

Slaying The Monster In The Classroom: Cameras in classrooms? YES. PLEASE.

As hard to write as it will be to read. The truth often is.

Autism Sparkles

autism sparkles-21This is something I need to write.  I don’t want to write it.  In fact, I don’t even want to know it.  It’s one of those hard to write kind of things because no one wants to believe it goes on and I hate to be the one to tell you but, truth be told, this is the kind of thing all parents NEED to know…especially parents of special needs kiddos who are speech impaired.  This one is going to hurt your heart a bit but keep reading anyway.  I will be bold enough to tell you it is as hard to write as it is to read.  It’s the very rawest truth.  It is the truth we don’t want to hear.  It is the truth none of us want to believe and yet, as black and bruising as it is to our hearts, it is still very much the…

View original post 2,363 more words

1 Comment »

Why I love autism ❤

Autism Sparkles

blog-4

The truth is I really do love autism.  I do.  I love autism because it has changed me and made me one hundred times the person I was before my boy was gifted to my life. I accept and love autism because I accept that my boy is who he is meant to be, he is made exactly as he was meant to be made and the journey we are both on is about helping to strengthen his weaknesses and sharing his radiance.  I don’t believe he is a mistake or that he needs to be cured. I don’t believe in lost puzzle pieces. I don’t believe there is any part of my boy that needs fixing.

You may not agree with me and that’s okay because, honestly, this is not the first time I have cut against the collective autism grain.  Not the first time he and I have…

View original post 355 more words

Leave a comment »

My boy this last week in his P.E. class. It wowed me !

Autism Sparkles

Blog 132

It started a few weeks ago. It was simple and yet as soon as I heard it for myself, I will tell you, it felt every bit of impossible.  That was when my spectrum kiddo’s P.E. teacher informed me that the mile test was coming up.  He asked if my boy normally participated in that kind of state testing.   I will admit his question was not a surprise.  It was a surprise to no one that my boy and physical activity try never to stand too close together for long.  My boy, with autism in his genes, avoids sweating at ALL cost and, in his defense, I will admit coordination has not always come easy to us.  In his ultra-honest-spectrum-view of life he sees no good reason for running.  It’s okay for other people but, for him, there’s just no reason to go there.  In his words, “Mom, running hurts.” …

View original post 1,187 more words

Leave a comment »

Autism Awareness: The Boy and The Wave

Blog 56

Each year at the elementary school it happens.

The teachers immediately voice their concerns, share their reservations about my son.  They share how the seemingly “checked out” little man is not ready for “their” class.  He is not ready for the rigor they tell me.  They don’t think he can keep up and they voice all of these concerns before they have ever gotten to know him.

By now I am used to the reservations about my quiet and sometimes differently wired boy and I don’t push back anymore….instead I wait.  I have learned to wait for it.  Wait for them to come to their own conclusion.  Wait for them to make the gasping discovery on their own and realize he is more than what they have imagined autism to be.  He is more than they have been taught in their teaching classes.  He does not fit well into their text book definition of who he should be because he is more and sometimes less than the definitions of autism they have memorized for exams.

So I wait for it.

The gasp usually arrives sometime in the fall.  Typically around October or November.  It always arrives before Thanksgiving.  It arrives on a startled face with big eyes and a wacky smile and it arrives on shuffling feet as they dart out to catch me during pick up.  It looks bright and it sounds inspired when they give me the back handed compliment that I have now memorized.  Their words line up as, “I wasn’t sure he belonged here when he first started but,” and before they finish their sentence they look me in the eye like they are telling me brand new words I have never heard, and then they finish with, “he is really smart.  That boy is brilliant.  I couldn’t see it in the beginning but I see it now.”  And I don’t use stern words or a holier-than-thou tone when I respond because I have waited for it.  I simply say, “I know.  He’s remarkable.  That is the beauty of my boy.  He has a quiet brilliance and if you are not careful, you can miss it.  I’m glad you see it.”

A wave of relief washes over me at this point.  The kind of wave that ushers rests.  The kind of wave that feels safe.  The kind of wave that quietly assures me, “You can stand down now.  They understand.”  They have been witness to his sparkle and they have arrived at a new and brilliant understanding of autism.  They will go on to teach others and they will never again assume that a quiet child is less because they can finally see that different is not less.

In that moment I understand that they will not only become a better teacher but they will go on to save other kiddos by loving who they are and giving them that chance they did not want to give my son.  The next time they will assume competence rather than crying foul and predicting failure.   This kind of wave that washes over me is one that says this teacher finally understands in their own heart what real autism awareness is, beyond text books and studies, and my boy and the wave have just transformed one more non-believer into a seasoned ambassador for autism awareness.  The kind of ambassador that will stay behind after my boy leaves their class at the end of the year and who will become another cornerstone of autism awareness, understanding and equal value for all students.  And all because one radiant child who was differently wired from the rest showed that there is not one simple version of autism that deserves to be educated.  Every child is an original and able and should be equally valued.  And I am encouraged because I know, with  statistics now announcing 1 in 88 children are affected by autism and an astounding 1 in 54 boys, there will be many more kiddos coming after my boy and they will need this teacher, this new autism ambassador, to ride that wave and to recruit more ambassadors so that equality and assuming competence is something that will be part of every child’s education.

2 Comments »

Autism: The Only Cure I want

blog 115

I am sure this will not be politically correct.

Lately it seems I often am not.   I simply speak openly and don’t measure my words or revise very diligently.  Honestly, there are moments when I hear the autism elite speaking and I am not even quite sure what they are talking about.  Those upper realms where the roar from fighting is so loud that children are eclipsed, is not a place I travel to.  I am the grassroots.  I am in the trenches. I am quietly fighting the good fight with my boy…one teacher at a time, one classroom at a time, one therapist at a time, one principal at a time, one superintendent at a time, one director of special services at a time, one school district at a time, one IEP meeting at a time, and one friend at a time.  There are no armies behind me, no troops rallying beside me.

It’s just me and my boy.

My boy is thirteen.  Many of you already know that but I repeat this for the newcomers.  They need to know I am not talking about a five year old because when we were five, I could never have imagined we’d be in middle school, on the honor roll and in regular education full time.  I could not imagine, in the days of two hour scream fests when he was slinging snot on his sweet kindergarten teacher, that we would go anywhere that was positive or good.  He is thirteen now and we have been in this fight with autism for eleven years.

It’s just me and my boy…and we’re alone but we are winning.

In a crazy way, I am thankful we have remained independent.  I am thankful we have not traveled the main roads or fallen into the popular trends.  Mostly, I am thankful my son was diagnosed back in the later stages of the darker ages of autism.  I am thankful we no longer live in the pre 70’s days of institutionalizing kiddos or the 80’s of pretty much still riding the fence and using the let’s-put-our-heads-in-the-sand philosophy.  I worked in the group homes in 80’s and I know what autism and institutions felt like and I am thankful my boy was not born in those days.  In the day of my son’s diagnosis, 2001, it was the dawning of awareness and the beginning of brighter days.  The dawn was thankfully breaking but, even still, not many knew enough to be helpful.

And, NO, that was not a typo.  I AM thankful my boy was diagnosed in those early days of autism awareness when nothing was really in stone.  It was perhaps the wild west days of autism awareness when risks could still be taken.  When envelopes could be pushed.  When teachers and parents were willing to step up and say no to the recommendations of school corporations and the corporations were still fumbling enough so they turned a blind eye to the cowboys that we were.  It was a time when seasoned teachers and principals called Cora were still in power and were skilled enough to say we’ll just go out on that  limb and we’ll give the different approach a try.  So many doctors and educators today sit in boxes.  They sit in books, they think they understand a six letter word and don’t even yet realize the striations involved, the complexities, or the layers of texture and skill behind that six letter word that they are not yet privy to after graduating with their teacher’s degree.  So many have not yet discovered that autism’s complexities and brilliance cannot be captured in a textbook and are more than words on a page.  Autism has to be lived to be understood.

I am thankful we had a maverick of a teacher called Kim who said yes and stepped up at a time when the rest of the world walked away and said what we wanted was impossible.   I am thankful we could plan his education without putting too much weight on dismal reports.  I am thankful we had a principal with enough seasoning to say, I’m here, I will help, I’m not sure exactly how this goes but let’s see how this boy can grow if we all stand together.  I am thankful that I did not immerse myself into the reports filled with “can’t” that relegated my boy to a life of nothing much.  I am thankful that somewhere in my softness a backbone grew strong and I learned to say no and to walk away from the ones who had formerly been my guideposts.  I am thankful for a family who saw the same glimpse of brilliance I saw, the sparkle that helped us see the light within the boy who was lost momentarily inside himself.

I don’t believe in curing autism.  I don’t believe that a refrigerator mom, or a number on a scale, or the flu, or a food, or an aging parent are the causes for autism.  I think there are a lot of different kinds of autism and I believe the causes are both genetic and environmental and as varied as the children who fill the spectrum. I don’t think there is a magic bullet or vaccine that will make it go away.  I think healthy eating will do us all a lot of good but I don’t expect any diet will make his quirks fall away nor do I want them to.  His quirks are home to me because I don’t believe he’s sick or wrong or broken.

I believe my boy is this glimpse of magic that has great strength and still holds marked weaknesses.  I believe he is in my life so that I can help him grow those weaknesses into strengths.  I believe I am the lucky one.  I believe, no matter how politically incorrect it may or may not be, that God gave him to me on purpose.  I believe God blessed me with this gift.  Yes, indeed, I do and I view my boy as a gift and a blessing every single day.

Yeah, I guess you can say autism is hard but that’s relative too, right?

  • I mean, honestly, being a young girl in India or Pakistan or Afghanistan or a lot of other places is hard.
  • Being a 17 year old boy sent to fight in the trenches of WWI was hard.
  • Landing on the beaches of Normandy in WWII was hard.
  • Being a Jew in the Holocaust was hard.
  • Being a parent to a child who has endured three rounds of chemo and is dying, well, that’s some hard stuff right there.
  • Watching your spouse die is hard.
  • Being a soldier and coming  home from Vietnam in the 60’s and 70’s was hard.

Yeah, autism is not always a cake walk but it’s not that hard.  Not really if you look at the big picture.  Pity is a pit that is only as deep as you let it be and I try not to let myself step too close to it.  It’s a slippery slope, you know?  There are lots of harder things to deal with than autism and I wouldn’t trade autism for any of them.  Yeah, there’s rough moments but, in the end, when the sparkles rise up, he’s worth it.  Autism is worth it.  Navigating the spectrum is worth it.

I don’t believe in magic pills or magic cures.  I believe in hard work every day.  I don’t believe in breaks because now is the time to work for my boy and there will be plenty of time for rest when he’s older, when he doesn’t need me so much anymore.  I believe in magic children who have the ability to refocus our attention on the good stuff, the important stuff, the back to basics stuff.  I am better for having walked on this journey with him and I feel like I am the lucky one.  I certainly believe the autism community could come together better but that’s a whole other subject.  I don’t play in the circles with the autism elite.  I stay in the trenches with my boy and work in the here and now, every single day, because half way or half hearted is not good enough for me.

It’s just me and my boy and yet we’re enough.

I take my place with the other families who get that, who are on the battle lines, and we find our cure every day with each other…having faith, keeping the hope and sparkle alive and being fearless as we fiercely hold the brilliance of autism up to the medical and educational establishment in an effort to help them SEE our spectrum kiddos for the radiant children they are.  Don’t ever stop being that cowboy, that rebel that stands up.  Don’t ever stop being fearless and fighting the good fight for kiddos who can’t fight for themselves because, in the end, that is the only thing that really matters.  Because, truly, if we fail our children…nothing else matters.  And, on the day when the fight is done and our kiddos can stand up for themselves, that’s the day we will all take that tropical vacation.  On that day, we’ll sit peacefully in the sand and we will reflect on the goodness that comes from faith as we finally experience the decadence of watching our children from a distance as they live their lives.  That is the only cure I want.  I want to keep faith, hope and fearlessness alive in this battle against autism.  Sparkle On, my friends, and thank you for your camaraderie!

Leave a comment »

Attila Ovari

Loving Life and Inspiring Others

Three Boys and a Mom

Life is crazy, messy and absolutely beautiful!

Relief Teaching Ideas

Sharing ideas to help make relief teaching fun, enjoyable, and meaningful.

The Moronta Journal

Messages from Mexico City...

a little bit about a lot of things

a positive outlook on life's little things

Outmanned

A collection of essays from Mary Widdicks: writer, humorist, novelist, and former psychologist who can't remember if she fed all her kids this morning.

An Autism Diary

A day in the life of David Hartley

wellfesto

hacking health, designing life

The Status Woe

Rising above mediocrity one mishap at a time

Squarehead Teachers

Free teacher stuff to get your elementary classroom all SQUARED away!

sarahmcsimmons.com

Living Life One Meal at a time!

myaspiewife

Tales & Reflections of an NT (Neuro-Typical) Husband of an Aspergirl, An NT's Perspective on Autism & Marraige

Kentuckyguard.com

Unbridled Service

Little by Listen

Breakin' it down one tune at a time

The Funky Behavior

I blog to Express not to Impress

Simple Tom

Some say I was born high. Others say i'm just simple :)

Tony Forcucci

A World Traveler's Photographic Travelogue

ANTHIDOTE

THE BEST OF LIFE AND THE WEB

Run5kaday's Blog

Daily distance running adrenaline!

My thoughts on a page.

Living, Laughing, Loving, Loathing.