Autism: The Cold, Hard, Wiggly Facts

autism sparkles-9

The most truth I can share with you on this autism journey is that honestly, ten years ago, I wish I’d known THIS. I wish someone had shared this with me.  I wish I could have pasted this to my mirror so I could remind myself every day that autism grows and skills change and that my son would go on to amaze me with his sparkle and his brilliance…NO MATTER how dark and uncertain our early spectrum days might have been.  In those early years, there was SO much I didn’t understand about autism.

So, Wonder Souls….take a really deep breath and if you remember nothing else that I share with you about autism, remember THIS…

At 2 my boy’s receptive and expressive skills were non existent, reports and evals were abysmal.
At 3 my boy did not speak.
At 5 he could say some words…but not TO me. No and yes were interchangeable.
At 6 he could answer yes or no but there was very little back and forth.

BUT…and pay close attention to this part (this is the really cool part of autism)….

At 13…..he says whatever he wants, shares original thoughts independently, AND we can have insightful conversations!
And, surprisingly, at almost 14,my passive boy even put the bully who was harassing him… into a headlock .

Because, the truth is, autism grows…it is NOT in stone.  Wonder Souls, autism isn’t like stone at all……it’s a lot more like jello.  It’s jiggly, it moves and, sometimes, it’s hard to nail down.  And, these days, the truth is that we are not perfect, we struggle socially, but we are STILL growing and moving forward every day.

Just remember……Who they are at 3 is NOT who they will be at 13.
So stay in the game, don’t give up and make sure you take that step back and look at the big picture because, I promise you, autism was never meant to be analyzed under the microscope.
Oh…and don’t forget to take a deep breath too while you sparkle on, my friends!

Run, Josh….RUN!

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 before the accident, Josh and his dad used to run together and his dad and his aunt made promises to Josh that one day, they would all run again together. Despite how hard the road ahead appeared to be, they vowed to work as a team, tirelessly, and make it happen.

Did I mention they are amazing people?

Did I mention his aunt, who had never run before, started running soon after that?

Today, after five years of working hard and after the aunt-that-had-never-run has logged over 1000 miles in marathons, half marathons and 100 MILE runs, the ENTIRE family will be running in the Modesto Marathon.  Yeah, I really did just type that.  Today it happens.

Today is the kind of day promises, dreams and miracles are made of.

Today is the day when we all get to see what a difference family commitment and prayers can make.

Today, unfortunately, I cannot be at the marathon since I have to keep my mom hat on and take care of some sick and recovering kiddos but my heart is with the entire family and I just knew you’d all like to share in the joy of days like this when lives are changed.  All who see Josh and his family today will be changed by their love and their determination.

I am wowed by them all.

Josh’s father is a boy I grew up with and I am so proud to know all of them.  Please join me in sending both strength and prayers to them as they all make this significant journey today and prove to anyone watching that prayer and family are powerful.  You can do anything with a committed family standing behind you and God in front of you.

These are the words his Aunt Dee wrote on her Facebook page today:

Josh, when you can’t run, we’ll run for you. When you can run, we’ll run with you and all the time, we’re running behind you! Run Josh…Run! Love beyond measure + 1,207 miles.”

Sparkle ON, my friends.  Sparkle On, indeed :).

Autism: Rule #1

autism sparkles-62

In all honesty, there really are a lot of things to know and learn about autism.  Clearly, after more than a decade of navigating the autism learning process, I will freely admit, I’m still learning. Lately though, as my boy is getting older, there are things I wish I’d known sooner, done differently.  The one piece I wish I’d learned first in our journey is something I’ve come to see as the first rule of autism and the prevailing smart point.  Of all things autism, this is the one I wish I’d internalized in those very earliest moments.

As simple as it sounds, “just don’t fret,” might as well have been pie in the sky when my boy was two.  No, you’re right, it’s not rocket science, my friends, but it’s also not always easy.   Simple, yet tragically challenging as well.  With all the stress surrounding the journey and the myriad of pieces and parts that we try to keep juggled in the air, not fretting can be a Herculean feat.  Not falling into the pity pit can be daunting.  I know, I know…don’t go preaching to the choir, right?  But, really, one of the smartest strategies you can participate in on this spectrum journey is  staying focused on your child and not allowing yourself to descend into the fret, into the pity pit, into the darkening levels of self doubt.

That’s rule #1 and that one rule can form the very foundation for all that comes next on your journey.  You’re an autism parent and you can do a lot of things.  You can fight, you can grow, you can learn and you can most certainly be the change you wish to see in the world but only if you don’t go fretting yourself into a corner.

Rule #1 means…

Don’t worry.

Don’t round you or your child’s life off to the nearest disaster.

Don’t mire yourself in the muck of the ‘what comes next’ internal battle.

Be more than just the sum of your fears…be fearless, my friends.  Face autism head on because as much as I know anything, I know you’ve got this.  It will take time, no doubt, it will also take faith, determination and a back bone of stone but, I guarantee you, you’ve got this like a tiger by the tail.

And, I will not lie to you, you’re not going to find autism in your comfort zone.

No, it won’t be all sunshine and roses.

No, it won’t be easy.

No, nothing in your past will prepare you for the colors autism will bring to your life.

No, there aren’t a lot of clear cut answers in the early days.

And yet, still I’m telling you, you’ve got this.

Rule #1, no fretting, naturally means you need to stand firmly in the here and now and refrain from that tip toe trip over into those elusive tomorrows or a quick traipsing off into the what-ifs because, with autism, staying centered and focused on the now matters when nothing else really does.  Focus on the work you can do today and don’t prematurely fret away tomorrow’s energy.  PERIOD.  The only thing you really need to do and actually have to do is to  appreciate all that your kiddo is today and don’t get your focus stuck on that theoretical cookie cutter that they aren’t fitting into.  And, if you do the work you need to do today, tomorrow will take care of itself.  Just have faith in yourself.

Sparkle On, my friends….and just don’t fret!!

The REAL Superheroes: The Magical Siblings of Autism

Blog-1

It happened on our beach day.

I was trying hard with four children to get out the door by 7:30 a.m.

We were off to Jellybowl and there was still a bit left to do. I had three kids plus one child’s friend to get organized, sandwiches to make, a dog to feed and a cat to appease.  The kids needed to get dressed, remember their rash guards and beach shoes and mom needed to remember to find the sunscreen, pack chairs, gather enough towels, bring clean comfy clothes for the drive home and enough drinks to keep everyone hydrated (but not too many since I would need to  carry them all up and over the train tracks).  I’m pretty good about the chairs and towels but I have forgotten the sunscreen before and it is never pretty.  I didn’t grow up using sunscreen so it is not top on my list but today I have been entrusted with a friend’s child so I can’t mess that one up.

Ok, I digress.  Away from the sunscreen and back to my point.  This is about autism.  Really, it is.  Just wait for it…

So in the middle of the chaos, and after I have just finished cleaning up the zucchini bread mess Miss Maisy left in the kitchen (because we did not adequately protect the zucchini bread my daughter made from the food obsessed labrador), I am  brushing my teeth when my fourteen year old daughter comes in to my bathroom to finish drying her hair.  It’s all good.  We co-habitate well and we share pretty well too.  And, at the same time as my daughter begins to unravel the cord on the hair dryer, my twelve year old son comes in to ask if I will tie his swim trunks.  He is all about being naked at home and not ashamed of his body in our halls but being on the beach and losing your shorts is an entirely different story.  He wants to be certain his shorts stay up.

With my toothbrush in hand and the toothpaste slop dripping off, I ask him to wait a minute.  He stands there patiently, waiting pretty well and then his sister does this thing she has started doing.  She is fourteen, he is her little brother and the really neat thing I see that morning is that he is just her brother… before he is her autistic brother… and she does this thing.  She steps in to help in.  Without a word, without a huff or complaint, without announcing it to me and before she plugs in the dryer she instinctively reaches down and, in a motherly fashion beyond her years, she ties his shorts.  He says thank you and goes on his way.  Without fanfare, she asks, “Isn’t this autism day or something?”  I finish brushing my teeth and tell her, “It’s autism awareness day.”  It’s a quiet conversation between us.  I tell her what the world is doing.  She asks what we are doing.  I tell her we are going to Jellybowl.  I tell her she can wear blue if she wants to.

I smile quietly to myself so that I don’t shine too much light on it.  This is all normal for her now.  I realize as we are speaking to each other that…. autism is natural to her.  Autism was never really part of her existence.  Well, it was and it wasn’t.  Everything about autism is familiar to her but it just never had a defined name.  It was not applauded or hated during her childhood.  It was just part of us and, because of that, autism is different to her than it is even to me.  It was just her little brother.  We never spoke about autism or being less or giving him special privileges.  He was just her brother and she treated him…well,  just like a brother.  She never asked what was wrong with him, he was just part of her world and she organically accepted who he was.  His value was simply equal to hers and her other littler brother.  Yes, he might have been quirky or amplified or different at times but it was normal to her.

He is simply the older of her two little brothers.

She was twelve before she ever spoke the word.  She was twelve before she ever asked what autism was.  She was twelve before she asked if her brother was.  I had books on the shelf and she was helping me organize them.  Actually, being the girl she is, she asked if she could organize the shelf.  When she was finished, she asked, “Mom, is my brother autistic? You have a lot of books about autism.”  And, that was the beginning of her understanding and maybe even putting together the pieces of her memories.  It wasn’t a big conversation.  I think I said something like, “Yeah, he is.  But that doesn’t mean we treat him any different.  We expect as much out of him as we do anyone.  He is just as capable as any of us and just as intelligent.  This doesn’t change anything.”  Her response, in that oh-so-lovely-twelve-year-old-tone, was something like, “I know, Mom.”

And, she is the sibling.

She is the next generation.

She is amazing.

She knows autism on a different level than most and it is simply part of life.  It is neither less nor is it more.  It just is.

She is the awareness others seek.

And, honestly, there is little fan fare.  We don’t hang banners, we don’t do walks, we don’t shine blue light on it.  We accept it and love it and bring it to the world in our quiet way and when others ask, we say, “Yeah, it’s autism.”  And, they say, “That’s autism?”  And, we say, “Yeah, it’s autism.  Yeah, that’s what it looks like.”  It looked different at three than it does at twelve but, yeah, that’s what it looks like. It was a lot crazier at three and at five and at seven than it is at twelve but he is still himself.  Autism is part of him but it is not all of him.

Yeah, it’s autism but it’s more than that too because he is more than autism.

My daughter is a straight A student who has a skyhigh IQ that mine never ventured anywhere in the vicinity of and I have great hopes for her.  She is remarkable and I hope one day that because autism is so natural to her that she will be the awareness in her generation that says, “Yeah, it’s autism.  So what?”  And not the kind of “so what” that says we don’t care about your needs because you are not like us but rather the best kind of “so what” that says, “What’s your point?”  The kind of “so what” that says we all have the same value and WILL be treated equally.  And the acceptance that follows the awareness begins with her as a role model for autism’s “So-What-ness.”  By birth she has become an autism ambassador but, the really cool thing, is it is so natural to her…she doesn’t even know it.  She simply accepts it as normal.

I hope she becomes a scientist or a doctor or the POTUS and with her strength and her ability I hope she sets the tone for her generation to begin to see autism through new eyes.  Her kind of eyes that see iridescence rather than a lessening of value.   In my biggest dreams (mine and not hers I have to tell you, LOL) I imagine her becoming a doctor who works with kids.  And, with her understanding, I imagine her telling these new parents,

“Hey there.  Yes, I do have the diagnosis.  We have found that your child is a bit iridescent.  Yeah, you’re right, he/she is going to be quirky.  It’s a kind of quirky sparkle that you may not be used to and you may need some support with it.  I know, it won’t be easy and some days will just down right suck because it’s not the norm, it’s Holland and not Italy but, take heart, these iridescent kids are crazy brilliant.  They’re going to seriously rock your world.  You just have to be patient.  Part of their brilliance gets stuck in their sparkle and it takes a little longer for these iridescent kids to sort it all out.  Don’t give up and don’t lower your standards though because he/she sure is going to surprise you. OH, and hey, if you’ve got an extra minute…let me tell you about my brother.”

And, I know, not everyone will agree with me.

I get it.

Autism is different for everyone.  But this is my dream…that one day the awareness will be so internalized that no one will care about the differences, or the tantrums or the lack of eye contact because we will also have a plan of action, a path to follow and others will inherently understand that, indeed, different is NOT less.  I hope one day that people will understand more so they will point and blame less.  I hope one day play groups won’t gripe and complain about their inability to socialize as easily as others and teachers won’t feel they are doing favors or being slighted by taking these kids into their classes.  That it won’t take specialized training to prepare teachers for autistic students because teachers and school districts will be expected to teach all students together and equally.    And, when the world is trying to point fingers and lessen those with autism I hope she, and others like her, stand up with their young peers and begin a new generation that says, “Yeah, it’s autism. So what? It’s all good.  They are just like us but a little bit different and that’s okay because when you stop being scared of different it just so happens you find out different is also pretty darn brilliant.  And then you find out, in this life, the more we share our differences, the more we are the same.”