Teachers Are Like a Box of Chocolates

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I so vividly remember feeling overwhelmingly helpless during those early years of our spectrum journey. I’m embarrassed to tell you that I was literally in tears during our first few IEP meetings because it was so hard for me to trust my boy to anyone. I cried and I cried and I cried and the “team” would assure me they would take care of my boy and, as a trusting young momma, I’d believe them. And, honestly, sometimes they did take care of my boy and those teachers were some of the most beautiful souls I’ve met on our journey. I’m still so eternally grateful for some of them.

But, other times, they didn’t take care of my boy. Though they were not necessarily bad people, they were also not good to my boy and I’m not sure if the damage that is heaped upon a child in those early years ever has the opportunity to be undone.  It’s dangerous, as parents and guardians, to allow our own emotions (and sometimes grief) to cloud our view so much that we don’t see the educational environment clearly.  Those years when I used my wishbone more than my own backbone are still not easy years to look back upon.  I truly cried more than I grizzlied up.

I will tell you, eventually and thankfully, I stopped crying.
Eventually, I stopped feeling helpless.

Eventually, I stopped trusting that a teaching credential makes you a good person or qualifies any individual to spend time with my son in an educational setting. I would learn later that a teaching credential only assures a school district that the candidate has successfully completed a predetermined set of coursework. Now I understand it takes a whole lot more than a teaching credential to see a child’s potential and be a great teacher. It takes a special teaching heart that sees through the rough days and into the brilliance within the child. Great teachers also know that brilliance isn’t always easy to see at first because the shine can be clouded by a lot of other challenges.

Like I said, I eventually stopped crying.

Eventually, my backbone grew firm and the tears faded.
Eventually, I learned how the educational game is played.
Eventually I came to see that my son’s education would depend largely on my involvement in the school and my presence on campus. I also learned that I might not always be popular on campus and I would come to understand how much the teachers would not be my friends….because it’s all kinds of uncomfortable to try and hold “friends” accountable when IEP goals are not met, growth is not made or when the classroom environment is less than kind. “Educational relationships” are much easier to hold accountable when the educational goals or environment fall short. Eventually I learned that if I was present/involved on the campus, my boy would get better treatment because when teachers and admin know you will not go quietly and you will not let what goes on in his classroom be a mystery to you, teachers and admin step up with your child.

Just remember, teachers are like a box of chocolates too….you never know what you might get. And that’s okay as long as you are not the tearful mess that I once was. Be better than me and do more than cry. By all means, have that long, tearful cry and clear out all those emotions because we all know that’s a healthy, cathartic feeling and our emotional stability often depends on it. But, after the tears fall, don’t let it end there….move on to the next step and be vigilant with your child’s education and with their emotional well being.  Praise those who have teaching hearts and stand firm and tall against those who don’t.

Be aware.
Be involved.
Strengthen that backbone and Grizzly Up, Wonder Souls.

Get to know your teachers, my friends, and don’t let fancy educational talk or glamorous clothes sway you. I kid you not when I tell you that one educational year has the opportunity to be a year filled to brimming with goals being met and progress being made or that one year can also be 180 school days of damage inflicted that can never be undone…. and no amount of tears falling will change that. You might not understand this yet, but you are stronger than you think and you can do this because your child’s future largely depends on it.  Get to know your teachers, get to know the educational environment and then grizzly on up, Wonder Souls, and Sparkle On.

On the Bright Side

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I get that not everyone sees autism as a blessing.
I don’t agree necessarily but I get it and I believe everyone feels what they feel based on their own experience.  For me, I can only speak for our journey.  I do believe autism has been a blessing and a gift.

What concerns me most is that if you go about your journey, seeing autism as a negative and not a blessing, you not only lessen the grace, value and blessing of the autistic individual but, while you are bundled up tight in your blanket of pity, deep inside that fog of woe-is-me, you might just miss the good stuff.

I think we can agree…the sparkles don’t always announce themselves in neon.

Sometimes they quietly tip toe in and hope someone is looking on the bright side.

If you expect and see the worst, I’m pretty darn sure you’ll find it..BUT…if you look on the bright side you just might find the sparkles will surprise you.

Which side are you looking on?

Sparkle On, my friends.

If Your Autism Looks Different…..

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Here’s something to think about.
Give it some thought.

If you don’t see autism the way I do, that’s okay.
If you disagree with my view of autism and this journey… that’s great.
If your journey is completely different than ours, be thankful.

My boy was diagnosed in the darker ages of autism and, thirteen years later, I sure hope things have changed. I hope you see things differently than me…because I hope to heck a LOT of things have changed. I’d be heartbroken if we were still walking the same road and stepping into the same prints.

If things have changed and you are traveling a path that looks better and you’re experiencing the journey differently than me and my boy…be thankful. And, in your moments of being thankful, just remember it’s kids like my boy who came before your child who cut the path you’re on. Remember the children who were permanently changed and scarred by an ABA that may look different than yours.  Remember kids like mine who went before you, who fought the battles, and who demanded their place in a regular education setting when districts refused. My son, and many students like him, battled for their right to be seen as equals in a time when districts still wanted to warehouse kids with differences in isolated SPED classes. If you have a different experience and you think this sounds like crazy talk, thank the older children who stood on the forefront of the battle and cleared the way for the  younger kiddos like yours who came after them.

So if our journey looks different than yours and you disagree with my view, be thankful for that, my friends, be oh so very thankful.

Sparkle ON, Wonder Souls.

Autism: LOVE?…that’s NOT possible…wait…really?

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Today a Wonder Soul asked if I really do love autism or if it’s just a show I put on to spray sunshine about.  How can you love it, they asked, when it’s so hard?  I know, I know…it sounds hoaky, right?

Love autism?

REALLY?

It’s a good question.  I appreciate the honesty.  How could you love something that is so tough, so hard, so filled with uncertainty, hurt, battles and sometimes loss?  I know, I get it, I’ve sat on that side of the emotion too once upon a time.  The side filled with one giant and blackened pity pot.  No, it sure isn’t all sunshine and roses by any means.  It’s thorny and rocky, mushy and murky in some moments and overflowing with tears in others.

So, really how can you love something so tough?

It’s not that I revel in the rough moments.  I don’t.  Struggle is never a happy place but the moment that warms it all up for me I realize, as I look back over our decade with autism, is when it occurs to me that the rough moments are when we were growing.  They are also moments that are filled with a whole lot of goodness too.

Who my boy is… is exactly who he is meant to be.  He is enough and when I take a step back and see autism from a distance, I realize the struggles and the challenges that we have endured are what have grown me into a better person and a better mother.  Into the person who sees grace and goodness within the rough spots.  The kind of person who can see greatness in autism  It took me a few years but, now… I finally get it.  Life isn’t about racing and struggling to sit atop the perfection podium.  Life is about  seeing wholeness right in the place where you are.  We are not perfect but we are complete.  Looking back I can see the blessings, the good fortune and the overwhelming depth that loving and even, dare I say it, embracing autism have imparted into our life.  It doesn’t mean I give up it simply means I allow for grace where it matters.

What I get now, and the reason I love autism, is I see the bigger picture and how that dreaded six letter word that begins with the letter ‘A’ and ends with an ‘M’, has blessed us with a bigger view of life and a deeper appreciation for different.  It’s only now that I see how that matters more than I ever could have understood before he became my child.  I see how autism has moved me, changed me, and grown me into that person I always wanted to be but didn’t have the resolve to become.

Without autism, I don’t want to know who I’d be today because I am certain I would be a lesser form of human.  It’s frightening for me, when I think of the might-have-beens, to think of what I’d be like without the education autism and my boy have brought to me.  I don’t want to know that person because who I was before he was born is not even half the person I have the good fortune to be today. Today I am better, I’m more, I’m richer in my understanding and I see life more clearly because autism and my boy helped me sit right inside that more astonishing view of life.  My boy and autism have taught me more than a text book and typical ever could have.  Because of autism and my boy, I have reached deeper, fought harder and opened my eyes wider to life’s wonder than I ever could have without the two of them.  I have the honor of seeing life through his eyes and that makes me pretty lucky because his view is simply and utterly profound.  Yeah, it’s hard…no doubt… but nothing great ever came easy.

I love autism because it has opened my eyes and blessed me with a more robust and understanding view of life.  The compassion and understanding he has brought to me has helped me to see that different is indeed NOT less and …it is in fact a whole lot MORE and, to be quite honest, I would not change a thing.  I think this entire world would be better if every person could truly open their eyes to the sparkle that lives within autism or if we could spread not only the awareness but the love and understanding that autism ushers in when it whirls itself into your life.

I am blessed and thankful and yes, I do, I love autism…every single day, every single corner, every single moment because the mystery that it unravels and the lessons it can teach are immense.    Sparkle On, my friends!

Autism: The One Truth That Matters

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My youngest child, the little wild man that lives in my house, just flew past me like a blur as he headed out the garage door and into the garage with the door slamming behind him. It’s Saturday, we’re still in jammies and I have no idea where he is going and at such speed.  At this point in my parenting life, I’m good with not knowing.  I have come to terms with that and don’t even feel a need to yell after him asking him what he is doing. I am content with my lack of knowledge.

I used to think I knew a lot, that I could be considered a relatively smart person, but kids come along and they have this not so gentle way of reminding me that, in the big picture, I know nothing.  My extremely intelligent 15 year old has clearly schooled me in how much I don’t know because when she asked me to quiz her in chemistry, I truly did my best.  I tried to test her on her chemistry homework and, well…let’s just say, it doesn’t go very well when you can’t even begin to pronounce the words…much less determine the right or wrongness of it all.  Science and math have never been my happy place.  I’d honestly choose child birth over word problems because at least child birth ends.  The torture of word problems never really leaves me.  That is largely why I have my first degree in history and a second in American Studies.   Very little math required.

The very first time I learned how much I don’t know was shortly after autism fell onto my proverbial plate.   I think it was announced to the universe, on that exact day he was diagnosed, that this mom clearly knows nothing….n-o-t-h-i-n-g, nada, zip, zilcho.  He went on to have four more evaluations and four more diagnosis’ so I am going to assume it was announced to the universe a few more times after that as well.  Repetition just makes it clearer I suppose.  I thought I was pretty comfortable with my lack of knowledge, despite my dual degrees from the university and another two teaching credentials, but I will tell you it has surprised even me that the more I learn, the less I know.  Despite all the book learning I have paid for, I still know very little.

I was reminded of my lack of intelligence when I stepped into my first credentialing class for special ed.  I had no idea that despite my decade of autism trench work, I’d need to learn a second language.  There is the whole other secret language the educational establishment keeps to themselves in order to describe and manage the educational experience of the kiddos in need of extra help.  Even after ten years in the trenches with autism, I found it mind boggling that I knew none of the secret words and understood less of their secret academic-acronym-ish language.  I knew what they were talking about, I actually had trench experience doing it day in and day out, but I did not have the catch phrases in my vocabulary like the instructors and other students.  And, I might add, parents of autistic kiddos were not consulted when the secret language was created because, if we had been, it would have been simpler.   After a few weeks in classes it actually started to feel like the secret language was created to keep everyone else out of the inner circle and to keep the makers of the secret language in an elite position.

I still don’t understand the need for the secret language other than it keeps the elite in a position of elite-ness and the rest of use confused, excluded and feeling as though we are somehow less because we don’t understand.  Terms like IEP, SAT, ADD, LRE, ED, LD, ABA, FAPE, ABC, ASD, FBA, ADA, LEA, ID, NCLB, CST, DSM, LEP,  ITP and MMR…just to name a few.  It really came to a head when I heard a professor start to teach about ‘backward chaining’.  HUH?  Backward chaining?  I have spent YEARS taking on behaviors and even setting up the behavioral programs for my boy’s teachers and not once had I heard such a word.  The word game the educators play was becoming ridiculous.  It seemed as though they were taking simple concepts and making them unrecognizable to the typical parent who was actually in the trenches and performing the tasks they described with the big words every single day.

It wasn’t long after this I came to start up Autism Sparkles, both the blog and the Facebook page of the same name, and my lack of smarts hit me all over again.  It was here that I came to realize how very much, despite my life as an autism trench veteran,  I still have to learn. Traveling around the streets of the virtual Village of the Wonder Souls, I had neighbors from all walks of life.  Good people.  Hard working people.  Big hearted people.  Smart people.  Different cities, different states, different countries and….different autisms.  As I walked virtually from house to house, as we met in our proverbial street, as I opened my mail box and uncovered new sparkles, I had this humbling moment and I learned the one thing that  I now know for sure.

Though the universe has proven that I know very little, there is this one thing I now know for sure.  It is the only thing I know about autism that is in actual stone.  Crazy as it is and even though many of us autism parents find common ground and sameness in our need to stick together and lend support, autism is still different for each of us.  I have humbly come to see that autism is VAST and the spectrum umbrella is IMMENSE, even endless in its scope and combinations.  Straight autism.  Autism and epilepsy.  Autism and chromosome deletion.  Severe, mild/moderate, high functioning.  The varieties are endless and the combinations intense.  Each and every child under the umbrellas is an original, each one a masterpiece in their own right. You can call it autism, you can warehouse it as a generalized spectrum disorder but, truly, each and every kiddo is marvelously different, unique and profoundly original and each parent paints with different colors on their canvas as they travel their own path that leads to their private destination.

The other thing I know for certain, for sure, for real… and it’s genuinely the only other speck of knowledge the universe has left me with…is that some places on the spectrum are more difficult to navigate than others.  Severe, mild and high functioning are all different states within the country of autism and there are even smaller counties inside each state that bring even more variety.   There can also be some boundary disputes that make the county or state you live an actual gray area but, despite the grayness of some edges, the part that is clearly black and white and outside of the gray zone, is that everyone has a different autism.  And, truth be told, unless you live or have lived in that particular county or that state, you don’t have the authority to talk about any place you have not lived.

The only knowledge I have been left with and the only truth I am certainly sure of  is that you cannot question the places you haven’t lived in, the streets you have not stepped onto and the shoes you haven’t walked in.  It may look similar, it may sound the same but if you have not walked in the shoes and slept in the bed, and ate at their table, you’d do best to keep your thoughts inside your head.  And, as we have come to believe in The Village, finger pointing is considered bad manners in any country so we just don’t go there.

In the land of Autism Sparkles, in the Village of the Wonder Souls, support and love are all we do.   It’s really all we’re good at.  The Sparkle Mommas posted a sign as you enter town reminding all who enter that kindness matters and finger pointing is not okay.  They even posted a few PSAs at the boat launch about stirring the pot just to be safe.  It’s better this way because we can not support one another through the rough spots or look on the brighter side if we have wasted our energy stirring the pot and tearing one another down during the waking hours.  Besides, stirring the pot and finger pointing would only wreck up the late night get togethers when the Wonder Souls meet in the street after the kiddos go to sleep to soothe the souls of friends and make sure everyone has eased their minds enough to rest.

As for the universe, I think it is finally at ease with my lack of knowledge and, out of sheer kindness, has generously left me with the one truth that matters…Stand up, support, love, spread some sparkle and REPEAT.