Monday, December 31, 2012

Growing Kindness

Jack goes to see Dr. DP in just 3 days for his bi-yearly follow-up visit.  As always, I am in the process of preparing an update sheet that I will send Dr. DP a couple of days in advance so that our visit can be more efficient and streamlined and - most importantly - so I don't forget anything.  I start each of these updates the same way, with a detailed list of therapies, frequencies, providers, and current goals and objectives.

In a way, it's the Reinventing household's half-year in review.

Afterwards, I list out the gains we've seen in the past 6 months followed by the challenges we are currently facing.  This time, there will definitely be a discussion about impulsivity, anxiety, and confusion, along with what we can do to alleviate all three for our boy.

The gains section seems short this time, but what it contains is nothing short of miraculous.  Truly.

There is a mention about Jack jumping; my God, he is finally jumping!  His body is finally able to not only coordinate his movements to lift him up, but he actually has the strength to do it now, even though he doesn't get very far off the ground.  As Jack's teacher said to me the week before school got out for the break..."This is the boy who used to not be able to climb up on a chair or the trampoline when he started school.  Now, he can jump!"

There is also a mention about how Jack will finally allow us to read him a story.  This is a skill that other families take for granted with their typical children, as their kids long to have story after story read to them at night.  For us, we would have to hold Jack down in our laps - flailing and screaming - to read to him.  There was something very anxiety-inducing for him about listening to a story, but time and patience helped us to uncover the secret.  You see, he needed predictability of reading the exact same story everyday in the exact same way with - unfortunately for me - the exact same parent, his Dad.

But now he lets us read him a story!  Two actually - we read The Night Before Christmas (and likely we will still be reading it in July) and One (a story about numbers and colors).  Reading a story - even the exact same ones over and over for months - is so critical to helping develop literacy in Jack.  It's something that other kids have been allowing and desiring for years, and now my boy gets to take advantage of the hearing the written word.

The best part of all is this...a small glimpse of the kindness and love that I know - that I have to believe - my boy must feel in spite of what the books and websites and doctors (even though Jack's doctors have never asserted it) might try to claim.

I've written before about Jack's beloved red Sleep Sack, which for simplicity's sake Brian and I have always referred to as "Red".  Jack has a "ritual" about his Red, if you will.  He bunches it up in his delicate hands, puts the fabric to his face, and rubs his face against the red fleece saying "Swess, Swess, Sowos" (and no, I have no idea how to actually type that, because it's a string of jargon - Jackese, if you will).  While I don't quite understand the ritual of it all or what Jack gets from it, I know it's an extremely comforting action for him.

Occasionally, I ask if I can have "More Red".  He places the Red up to my face and I go through all of the motions he does - rubbing my face on the material and saying "Swess, Swess, Sowos".  It's all part of a routine that we've practiced and done during Floortime many times.  If I could say that Floortime has taught me one thing, it is to connect with my boy in whatever way I can, to think outside the box, and to realize that rubbing my face on a Sleep Sack can be a way to form a connection with someone, if you try.  You might say it's a learned behavior, except for this...

He now does it spontaneously from time-to-time.  It's not daily or even every other day, it may be once a week or less, but he does it.  He doesn't do it when I'm upset or anything, but every once in a while he brings the red to my face so that I can rub my face on it, too.  He smiles as he sees me doing this.

I have to believe that this is my boy's way of showing he cares and that he loves me.  He wants to offer me an opportunity to enjoy something he enjoys so much himself.

Now, do I take enjoyment out of rubbing my face on a piece of dirty, drool-coated red fleece?  In practice, no, but that doesn't matter.  I have to believe that Jack is wanting to share with me an activity that he enjoys so much.  He wants me to experience it, too.

For a kid who has never given a spontaneous hug, never given a spontaneous kiss, never comforted someone when sad or upset, never pointed to an object to show interest, and never brought an object to someone to show it to them, this is monumental.  Just like when a baby feeds his mother a Cheerio for the first time, my boy is showing a glimpse of the innate kindness and good that I know exists within him - that exists within everyone.

It just shows that then you parent an autistic child, you have to look outside of the typical to find the true beauty that exists within your life.  My boy may not shower me with kisses, but he offers me a sniff of his Red, a gesture and an object that is deeply meaningful to him.  I'd argue that all of our children do show kindness and love, but in their own way.

As Jack does with his Red.

Our list will contain only 3 accomplishments for this 6 months - jumping, allowing us to read to him, and offering his Red to us - but what a list of 3 it will be.

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Happy New Year to you and yours from the Reinventing family.  May you find small victories and milestones not just in the big skills but in the most ordinary ways, the most unexpected of places, and the most beautiful of experiences throughout your New Year.

Friday, December 28, 2012

Walking Away

What you are reading is attempt number 4 at trying to determine the right thing to say here, so I'm just going to out and say it - I've been considering walking away from writing for a few weeks now.  No mental health break, no social media vacation, just walking away.

Because I'm tired.  I'm really very tired.  I've been fighting a background battle and it's making me war-weary.  I'm tired of feeling like I'm fighting a battle on two fronts - a battle in which my good ideas aren't given much regard and the bad ones are very much highlighted.  A battle in which two sides - which my God are actually on the same side! - seem to be fighting just to keep the fight going rather than compromise.  A battle in which I'm accused of embarrassing others.

My honest assessment of the autism community right now is that it is the average mamas like me, like you, like most autism parents, that make up, well, the average, and we are not horrible people, either.  I would argue that a portrait of the typical autism family is this:

- Parents who love their children and would do anything - absolutely anything - for them.  It's parents that would move mountains to help their children access services, accommodations, and educational experiences to make their lives easier and their world better.

- It is children who are often misunderstood by the world's perceptions of autism.  It is children who - in their own ways - are full of love and hope and each have wonderful gifts to present to the world.  It is children who have many challenges, but who also have many strengths.

- It is families who work together through some very beautiful experiences, some very uplifting moments, and some very challenging days, months, and years.  It is families who enjoy the good times and shed a tear during the bad ones.  It is families who understand that dichotomy of raising a special needs child, appreciate it, but try to not let the bad times overshadow the good.

Sounds like the average family, right?

The problem with autism is this, it is a collection of symptoms that - in all likelihood - probably represents a multitude of causes, biological states, and abilities and, therefore, probably is a collection of hundreds of different "autisms" (I wrote about this pretty extensively in a post titled One Label, Many Causes, Many Autisms).  So in the same way that I can't speak for every woman or every American or every engineer, no one person, no one parent, and no one autistic can speak for the multitude.  There are non-verbal autistics who are fine with not speaking (as they should be - not speaking doesn't mean not having anything to say), but there are others who might wish they could speak (for any number of reasons - perhaps they wish they could fit in at school better).  Regardless of the reason, what makes one person's desires and viewpoint more important - more valid - than another?  All autistics, all people, and all families have a right to their own beliefs, so long as those beliefs don't infringe upon the rights and beliefs of others.  Where those beliefs spread actual ignorance and hate is where the line is drawn.

Yet, I find that the average mama like myself doesn't tend to have her voice truly considered in the debate.  Why?  Because I don't really take a side.  I say that - in many cases - both sides have valid points.  I also say that we have to stop looking at one another through adversarial eyes, looking for ways in which to put down someone else's viewpoint.  We need to loosen up on the way in which we harp on language and semantics and focus on ACTION.

On that same token, as I've tried to expand my writing a bit, I've felt that some of my better ideas have been ignored, only to see them pop up a day or so later and become a "thing" somewhere else.  Not a big deal really and I'm not saying that anyone has been stealing my work, but when I put so much time and energy and focus into producing writing that I hope will make people think and consider, I really don't appreciate it when my ideas get ignored and then "rebranded" the next day.  Just because I don't have thousands of Facebook followers or readers doesn't mean that I don't have anything to say.  It just means that my focus has always been smaller, because that's where I feel like I have the most impact.  I don't want to take over the world; I just want to make a difference, one person at a time.  I want one person each day to come here, read this, and feel like someone has walked the path alongside them.

With that, I've also had calls that I might be embarrassing people by sharing my son's stories.  There's been debate that I might be invading his privacy.  That I might be making my life a side-show spectacle.

However, I love to write.  It's a cheap form of therapy.  It helps me tell people how wonderful my child is, that autism isn't what they think, and that he's a great person to get to know.  His challenges and the bad times don't make him who he is.  His autism doesn't make him who he is.  No, he can't be separated from his autism, but it is just a component of the complex and wonderful and unique person that is Jack.  It's a bunch of the building blocks, but not the whole structure.  He is an autistic person, but what I want people to see it the person - the humanity - that exists there and not just a diagnosis.

I don't think there's anything wrong with that, but perhaps that's not correct.

It's that fight that I'm tired of fighting.  Who knew that arguing that my child is a person first and foremost as well as autistic would bring the rallying cry out?  Do you know that the "This is Jack" picture I posted on Facebook actually received a lot of negative (and luckily, private) feedback?  Why is that?  Is it so wrong to say that autism isn't the end of the world?  Is it so wrong that I'm not ashamed of my family's story, my boy, who we are or where we've been?  Is it so wrong to say that life's tough sometimes?  Is it so wrong to say that we should all work together?  Is it so wrong that I should demand that people treat him as a person in spite of his autism?  Is it so wrong that I should desire for the world to see Jack as Jack instead of just seeing autism?

I think people think that these ideas can't exist together, but I assure you that they can.  I can think autism is not a bad or a good thing - being NT comes with the bad and the good, too - and also wish that people saw my son as a person rather than for his disabilities.  Fundamentally, I just want everyone to treat everyone else with respect and consideration - the Golden Rule, if you will.  I believe that everyone - autistic, NT, or whatever you identify with - can meet each other halfway and be decent human beings.

Yet the dialogue lately has crushing me.  Really, it has.  It's one of those times in which I want so desperately for the world to be a better place and I'm not sure if I can make it so.  I'm not sure if this medium is the place to do it.

I just wish we could all see how much more alike we are than different - parents, autistics, and children - and that we could work together respectfully for the good of all.

But habits die hard with me and - in all likelihood and after the consumption of some chicken wings and Reisling (which together makes the whole meal fancy) - I'll be back tomorrow.

Autism and Fearing Intellectual Variability

My kid is a smarty pants.  He has a memory that I would love to have (I'd be able to remember everything I needed to get at the store if I had it).  He can - by memory - remember the sequence, position, and script of the spelling of each and every word every spelled on Super Why!  He knows all of his numbers, colors, and - of course - all of his ABCs.

Yet, on 3 different occasions, my son has tested as having a mild to - depending on the test - moderate cognitive impairment.

Now, I've spoken before about the trouble with IQ testing.  Really, IQ tests are designed to test the IQ of NT people.  They are designed for someone who does not have communication challenges and someone who does not struggle with attending to task, sensory distractions and issues, and social challenges.  Unfortunately, our own inadequacies in testing butt heads with the fact that a single number - IQ - is used to measure and project and stereotype and determine the future of an individual.

All this because of a damn test?!?

Now, as much as I would like to believe that this is the sole reason for Jack's performance on previous IQ testing, I know that it's probably not the whole story.

You see, Jack's special instructor - who he's worked with for nearly 2 years - feels very confident that he does in fact have a mild cognitive impairment.  Now, we know he has cognitive delays certainly, and whether those delays stick and the impairment is more stable is up in the air.  I can say that having seen Jack undergo various tests like the Stanford-Binet non-verbal portions and other tests, many of the tasks he couldn't perform for them are ones that I have not seen him spontaneously perform for us.  He still struggles with matching.  He's still grasping object permanence.  His cognitive reasoning skills seem very delayed, based on what we can tell so far.

We just don't know, either.  It's hard to tell what our kids know and don't know when they don't always reveal it to us.  As Jack's days increase, it will become more clear.

But so what if he remains in the mild cognitive impairment range?  Who cares, really?

Which is why when I hear other parents of kids on the spectrum - or adults on the spectrum - try to vehemently deny that autism and intellectual disability can (but not always or even most of the time!) go hand-in-hand, I cringe a bit.  I also cringe when - in the same breath - I hear claims that most kids on the spectrum are actually more in the gifted range in terms of actual - not measurable - intelligence.

I think that as the definition of autism evolves over time - as it has - we see a very broad spectrum of abilities among autistic individuals.  I see it among children Jack's age very clearly.  I see children who learned to point and clap and wave around the age of 2 (still delayed), while my son is still learning these skills.  We see children who are fully verbal - little professors, if you will - and some who do not speak at all.  The majority probably fall in the middle somewhere.  We see children who have very good motor skills while others, like Jack, need physical therapy.  I see kids who can self-feed and kids - like my son - who can't.

And while I don't have statistics to back it up, my gut feeling is that the distribution of actual - again, not measurable - IQ among autistic individuals probably resembles the distribution we see among the NT (which, for these purposes just means "non-autistic") population, too.  There are certainly autistic people who are gifted, but most aren't.  There are certainly autistic people who are of average to slightly-above and slightly-below average intelligence.  I'd argue that the majority of autistics are in that range, whether or not they test that way.  There are also people on the spectrum who have cognitive delays and impairments, but again that percentage of the autistic population is low and the distribution probably resembles what it does for the rest of us.

Yet, I hear people claim that those cognitive delays and impairments can't be due to the fact that a person is autistic.  Well, if we look at what we think causes autism - a difference in neurology, or being "wired differently" - doesn't it stand to reason that different wiring probably produces variations in IQ, too?  We see a spectrum of behaviors among autistic individuals, and yet we see people argue so strongly against including IQ among that spectrum.  If the way our brain is wired affects speech, motor planning, and social reasoning, then why is it a stretch to include IQ in that arena?

Why is that?  Why are we afraid of intellectual variability?  What is it about linking cognitive delays in some individuals to autism that sends everyone screaming foul?  The autism community doesn't want the ability to speak to reflect an individual's capabilities, so why must IQ be thought of in this way?

Some calls are valid.  Websites that claim that a vast majority (we're talking upwards of 75% or more) of individuals on the spectrum have an intellectual disability are just plain wrong.  If they are basing those numbers on data collected from IQ testing, I'd also say that they're wrong.  To truly assess an individual's IQ, one must look at how they perform in all settings, not just a standardized testing scenario.  Even taking into account only IQ testing outcomes, 3/4 seems like a very high number.  I would far prefer to see something that states that while some autistic individuals test as having a cognitive impairment, that number is likely to be skewed due to testing inadequacies.

Really what needs to happen is that we need better scientific study of IQ among autistic populations and how to best assess IQ in special populations in general.

But why do we want to disconnect IQ from autism?  Why is it that the autistic community fears being linked to low IQ?  Well, in part it is because society has created a stigma about low IQ.  Having an IQ below a certain number that represents a certain placement on the bell curve seems to have all sorts of implications for what someone is capable of doing.

But does it, really?  If my son is - as many have said - demonstrating cognitive delays and showing signs of a cognitive impairment, then I think it is nothing to fear.  So what if my kid's IQ is below what society thinks should be considered "average"?  Does that really have that many implications for his life?  Does it say that he is anything less than you or I or even other autistics with average or above average IQs?  When elements of our community scream and point "This is not who we are!" when referring to cognitive delay or impairment, we send the message that there is something wrong with that state of being.  That we don't want to be associated with it.  That we are afraid that people will consider our children, loved ones, and friends as less than worthy of respect and regard if this is what people might think when they speak to or about our autistic loved ones.

Isn't that what we work against every day in trying to remove the stigma that society has placed on autism itself?

For the record, cognitive ability has NOTHING to do with potential, or worthiness, or even intelligence.  My son is a smarty pants.  How many kids his age know all of their letters or have his memory?  Does being able to reason through the placement of tangrams on a card, or feeding a picture of a boy, or following two-step directions with imbedded language have anything to do with who he is and his true intelligence?  Does finding a ball hidden under a cup without a visual cue have anything to do with his true intelligence?  Does putting together a 4 piece puzzle have anything to do with his true intelligence?  He - along with many other children with cognitive delays - can navigate an iPad like a friggin' rock star.  He - along with many other children with cognitive delays - is SMART.

No, it doesn't.  Because we have to redefine what intelligence means to us.  Each person is intelligent in their own way.  Each child is smart in their own way.  A child doesn't have to be verbal to know how to cry and manipulate his parents to get what he wants.  That's smart!  A child doesn't have to have object permanence to know that I can climb up on the counter and open the cookie jar because I saw Mom stash Oreos inside.  That's smart!  A child doesn't have to be able to read to know that those golden arches mean French fries and that a smile and a simple word of "Fries!" will melt Mama's heart, sending her speeding towards that drive-thru.  That's smart!

Intelligence should be redefined as using what abilities you possess to get your needs and desires met.  I'd argue that all children - regardless of IQ level - are masters at doing just that.

I'd also argue that I know people who are considered absolutely NT and very intelligent - graduating from the best schools, top of their careers, and have many accolades - but who are some of the dumbest people I've ever met.  I'd argue that we all probably know one or two people like that.  My husband went to a very prestigious school here in the South and I met loads of very intelligent idiots there.

So, let's not work so hard to exclude or marginalize individuals with low IQ from our conversations about autistic individuals.  When we do, we are doing the very thing we want people to not do to our community, and that is stigmatizing.

Wednesday, December 26, 2012

This is Jack

Last week, I did a photo for Autism Shines in which I described my boy and followed with the words -

This is autism.

Well, here's the thing about that; the image you saw is indeed what I want people to think of when they think of autism.  I want them to think of a boy who loves letters and timers and Super Why.  I want them to think of his smile.  I want the images of that smile to outshine all of the misconceptions in their minds about who autistic children and adults are.

But...when I reverse it, is that what I want to take away?  That my boy is autism?  I'm not so sure, and here's why...

I don't think that having an autistic child - or being autistic - is anything of which one should be ashamed.  I am not ashamed of the fact that I have an autistic child; rather, I'm prouder than any mama could be at just how hard my baby works, at how far he's come, and how much he inspires and delights and enlightens everyone he meets.  I hope that he too can feel proud of who he is, if and when he comes to fully understand it and what it all means for him.

Yet I don't like the thought of autism defining my boy.  Jack has autism, but he also has SPD and dysphagia and dyspraxia and hypotonia and expressive/receptive language disorder and a speech sound disorder and - hell - even eczema and chronic vomiting and any number of other diagnoses he's received (if you want to get technical about it).  I'm not sure that a laundry list of diagnoses is what I want people to take away when they meet my boy.

After all, that picture could have easily said "This is SPD" or "This is hypotonia".  Would those diagnoses have any more defined Jack as "This is autism" does?  I'd argue no.  While my son can identify as an autistic person, it is not what defines him, nor would I want any diagnosis to be what defines him any more so that I want people to only think of me as an American, or a female, or a mother.  Rather, I want to be thought of as the unique person that is me, and I imagine that Jack would want the same.  I imagine that we all want that.

I want them to see a child who has the most incredible memory of any kid I've ever met.  I want them to see someone who knows all of his letters, numbers, and colors, even if his language delays might make you think otherwise.  I want them to see a child who rubs his red Sleep Sack on his mama's face because it's something he loves to do himself and - in his own way - this is his way of being kind and generous.

I want them to see someone who is pure love.  Who is more than a diagnosis.  Who is utterly and uniquely Jack.



Because he is the best person that he could ever be.

Tuesday, December 25, 2012

So This is Christmas

As you know, I strive for honesty on this blog.  Life raising an autistic child can be beautiful, messy, wonderful, and heartbreaking all at once.  I don't sugarcoat life, but I try to present it in a realistic, yet optimistic, light.  To do otherwise would be denying all aspects of what parents experience in the process of raising a special needs child.  The bad times bear witness not to my boy and who he is, but just to the way life is for our family.

The holidays are tough for us, just as they are for thousands of other families with autistic children and loved ones.  Yes, our children need - they want - something other than what the holidays tend to dictate.  The whole of it all can be - and often is - too overwhelming.  As parents, we may understand that.  We might acknowledge it.  We might even embrace it.  Yet to deny that we don't feel a twinge of longing for that Norman Rockwell Christmas that we create in our minds - the Christmas of our childhoods - is to deny the true range of emotions that many parents feel this time of year.

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I had hopes for this year.  My boy's almost 4.  Other parents I know with kids on the spectrum said that their kids had shown interest in Santa by this point and could answer the "What do you want for Christmas?"-type questions.

My boy's not there yet.

We had worked with him through his special instructor on giving a rote answer to "What do you want for Christmas?" ("I want toy microwave" is what we taught him to say), and he'll sometimes answer.  He can label a picture of Santa this year where he couldn't the last.  All of this had given me a cautious optimism about the holidays.  We were making forward progress.

Of course, my ambitiousness about Christmas could not go untested.

It is such a thin line we walk - inclusion for inclusion's sake and leaving a child out of an activity for his/her own sake.  We want to include, not just for our children but for ourselves.  We want our special needs children to be a part of the festivities.  We don't want them to feel left out.  When they don't have the words, we don't know where to skirt that line.  We don't know when we've gone too far until we've breached that barrier.

This year, I tried to involve Jack in putting cookies on a plate to set out for Santa.  Sure, it had been a long day, but I wanted my boy to be a part of what children half his age enjoy about the holiday.  He's never participated in the celebration much before, and I wanted to involve him in just a small way.

I set out the plate we use each year for Santa.  It was a plate that I had used as a little girl.  It held memories that I wanted to share with my son.  I had hoped that - finally - this was the year.

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"Let's get cookies for Santa," I coaxed.

"No cookies!  No cookies!"

I knew what was bothering him.  He thought I was going to make him eat the cookies.  I never make Jack eat anything, but other people do.  It makes participating in any activities with food - even ones in which I wouldn't expect him to eat anything - so very difficult.  I needed to get through to him, to help him understand in his terms.  "Jack, Santa eat cookies.  No Jack eat cookies."  I made it simple, trying to convince him that no one was going to make him do anything.  I just wanted him to be in the same room.

I picked him up and we went into the kitchen.  As I set him down, I thought he was going to be okay.  God, I really thought it would be okay.

Suddenly, he began to scream.  "NO!  NO!"  Faster than I could react, he had grabbed the plate and - with all of the force he could muster - flung it across the kitchen where it smashed into bits on our ceramic tile floor.

I stood there, hands clutched on his shoulders, in a sense of shock.  I didn't know what to say.  It seemed as though my dreams for a million Christmases - all of the Christmases of joy and wonder that I had been expecting with the birth of my child - were laying in bits on the floor.  The flood of emotion overcame me and I stood there motionless.

There was no more talk of Christmas or Santa or any attempt at inclusion that night.

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I wish I could say Christmas Day was any better, but it wasn't.  I had gotten objects to feed into his perseverations.  I went more low-key this year.  I tried to do what I could to help him enjoy it and understand.  It didn't matter.  None of it mattered.  The new toys were thrown and ignored.  He screamed anytime I tried to speak.  I couldn't even speak to my child that morning without angering him.  He was upset and angry and just wanted the familiar.  He spent a large chunk of the morning playing with his iPad.

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As I typed this, I could only imagine the reaction I would get from some people who might read this, but autism awareness and acceptance wasn't at the forefront of my mind on this Christmas Day, nor can it always be.  Sometimes, we have to say that it's okay to feel sad what we don't get to experience.  I wanted to just strike a balance between my own desires as a mother to create a happy Christmas for her family and my child's desires to have nothing to do with it.

This isn't a day for me to spread optimism.  Instead, today is about reality.  It's about reality in it's raw and unfiltered form.

Here's the thing - it's not about acceptance.  It's not about autism really.  This is about this mama's heart hurting again this year for the experience that she has so longed for and has yet to receive.  This is about wanting to share the holidays with my child rather that completely shut them out as he would have us do.  It's about a need to feel like that is a valid emotion, because I am absolutely allowed to hurt when things don't go the way I have dreamed.

So many people tried to tell me that this would be the year.  Other autism parents told me that their kids got it by this age and were happy to receive presents.  Yet, we're not in that place.  I have to hope that we'll get there someday, because why would I try at all year after year if I didn't believe that this would be the one in which the magic became real?

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God, I just wanted him to be happy!  No matter how hard I tried, why could I not make it so?

I felt so helpless.  The tears flowed freely that day.  They flowed because of the injustice of it all.  They flowed because I felt that my boy was missing a magical part of childhood that so many experience - including me when I was a little girl.  I remember the Christmas that I was about Jack's age (I actually would have been about a month younger than he is now).  I received a dollhouse. I remember that magic.  Is it so wrong of me to want him to experience that joy?

And is it so wrong of me to - albeit, selfishly - wish that I could see the joy in my child's face, as my parents did in mine, when he sees his gifts, when he sees the stockings, and when he puts out that plate full of cookies the night before?

I don't blame my boy.  I don't.  Instead, I just feel anger and disappointment that I want this so much, because if he's perfect as he is, if it's not his fault, and if this is just our reality, what more is there for me to do?  Wishing it to be different doesn't make it so.  It just leaves me embittered.

I just wish I could help him understand, and I wish I didn't have to wait another year for a do-over.

Monday, December 24, 2012

Dear Santa

Dear Santa,

I think I've been a pretty good girl this year.  I've done what I can for my boy and I've tried to give back, too.  I've kept the swearing to a minimum (usually), I don't drink that often (except when Barefoot Reisling is on sale or when I have a bottle of Pinnacle Cake Vodka around, but let's be real - that stuff is gooooood), and I put money in the collection plate each week at Mass.

The bottom line is that I've done my best.

So, this Christmas, I have a few things that I can't seem to get enough of, so I'd like more of it next year...

  • My boy's sweet little voice.  I waited so long to hear it and I can't get enough.  Even the jargoning/babbling that he still does from time-to-time is precious.  He has the highest-pitched little voice for an almost 4-year old, and it's just music to my ears.  I especially love the way he says "Jack" (which comes out like Jah!), "Mommy" (accentuating it out into Mom-Mee) and "Daddy" (which sounds like Da-yhee).  I hate to be greedy, but I want more, please!
  • My boy's sweet smiles.  What was so few and far between a year and a half ago now brightens my day.  I don't take a single one for granted.  I want my boy to keep smiling away.  Please don't take them from me.
  • A few extra stolen snuggles.  I know its wrong of me to take advantage of iPad time to sneak an arm around my boy and get a stolen cuddle, but you'd do it too, right?  So, maybe you can see to it that Jack doesn't notice a few more of those stolen cuddles so I can get them more often?  Would that be asking too much?
There are also a few things that I'd like to get for the first time...
  • A hug from my boy.  His hugs involve leaning in while I embrace him.  Do you think that maybe you could make it so that he hugs me back?
  • A spontaneous kiss.  When I ask for a kiss, I get a head leaned in to receive one of mine.  Occasionally, he turns so that our lips meet.  I would love it for him to walk up and plant a kiss on my face, if it wouldn't be too much trouble?
  • For Jack to enjoy Christmas morning.  I've always longed for my boy's eyes to light up on Christmas Day when he sees gifts that he loves.  I've yet to get that.  This year, I've worked - I mean, you've worked - to make sure that Jack gets what he loves, not what is good for him or what builds skills.  Since I've - I mean, you've - gone to so much trouble, would it be too much for him to LOVE it?  No?  Good!
  • For my boy to actually eat some birthday cake at his birthday this year.  I know this one is a couple of months off, but I can be patient!
  • For my boy to go on the potty for the first time.  Enough said.  Either this, or please put several boxes of diapers under the Christmas tree, because those things aren't getting any cheaper.
But most of all, I would like this:
  • For my boy to feel like he is the greatest kid on Earth.  Because he is.  Because I think - I know - that he is.  Because I love him more than I ever imagined my heart could love someone.  Because he has made me happier and prouder in his nearly 4 brief years of life than I have ever felt in my 30+ years.
Also, getting to sleep in once or twice and a Chinese food dinner - with potstickers - every now and again wouldn't hurt either.

If that isn't too much to ask, I'd appreciate it.

Merry Christmas, Santa, and help yourself to the Candy Bar Cookies (they'll rock your face, I promise) and the glass bottle Coke (you're in the South, Santa, and only the best for you, man).  I'm not trying to bribe you or anything...

Regards, Reinventing Mommy

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I hope each and every one of you know how much I sincerely appreciate the time you take to read my work each and every week.  To you and yours, I wish you the Merriest of Christmases and blessings to you all for a very Happy New Year!  ~  RM

Wednesday, December 19, 2012

Simply Evil

Major trigger warning with this post, people...

I wanted to let this go today.  Really, I did.  Then, Jess from Diary of a Mom posted something on DOAM's Facebook page last night that I simply couldn't ignore.  It was a picture - a picture that brought forth in my the kind of raw, visceral reaction that just shook me to my core.  A picture that questioned all of the good I feel for humanity at this very moment.  A picture that made me question "Why?" and gave me that moment of pause in which I just wanted to stay indoors with my boy and never come out.

I debated even mentioning it.  Even giving it the time of day.  To a large degree, the issue has been taken care of, but the fact that someone even thought these things just sickens me.  In that way, the damage has been done.  I thought about trying to move forward - because what would I say? - but I was tossing and turning all night about this one.

It needed a post.  It needed a raw and emotional post that I typically try to temper, but I'm not tempering the floodgates today.  Not for this.

DOAM posted a screenshot of a Facebook status from a page that has long since been taken down on Facebook, thank God, but as I said, the damage has been done.  Someone thought these thoughts and put them to the page.  I have no fear of giving the page undue page hits now since they have been removed from Facebook, nor do I have any qualms now of publicly outing them, because...well...just read the name of the page:

Aspergers Prevention Campaign:  Stop the slayings

And here is the Facebook status from that page that brought me to my knees with pain and heartache and anger and fear:

When we reach 50 likes, we'll find an Autistic kid and set it on fire.

I won't post the screenshot because it was just too raw, too disgusting, and - thankfully - the page is no longer there.

But how?  How can people feel such hatred for people with autism?  It is absurd to me to even comprehend it.  To think that my sweet boy could be seen as anything evil - as anything other than the absolutely beautiful angel that he is - just sickens me.  The fact that someone would post something so hate-filled about children like mine makes me question all that I want to hope for humanity.

Here is the deal - there is absolutely no connection between planned violence/murder/mass-murder and autism.  None.  In fact, out of all of the sensationalized mass-murders (God, how awful is it that I have to pluralize that word?), how many have been perpetrated by a person on the spectrum?  One.  Just one.

If you recall my post from several days ago titled A Diagnosis Does Not a Personality Make, you might recall the vehement argument I put forth that having autism doesn't make you violent, or a jerk, or kind, or sadistic.  Rather, people on the spectrum have a vast range of personalities just like the rest of us.  Autism is a neurological disorder and has nothing to do - absolutely nothing to do - with planned violence.  There are good eggs and bad eggs among people with autism, just like there are with the rest of us.

Also, need I point out that some people are simply evil?

Here's the thing - someone on the spectrum is far more likely to be the victim of a crime - like abuse, neglect, or the thing we all fear most, sexual abuse - than they are of ever being a perpetrator.  Autistic individuals do not lack empathy, despite what the media, the medical community, and their outward appearance might have you believe.  Upon hearing from autistic adults, I can tell you that they not only feel for their fellow human beings, but they feel and internalize those emotions much stronger than any of us NTs out there.  In fact, these emotions come in so strong for some that they just overwhelm them. So, they not only feel for their fellow man, they feel very, very intensely.  Just because their outward expression may not reflect it or because they struggle to pinpoint and identify that exact emotion doesn't mean they don't feel it.  Empathy isn't identifying emotion; empathy is feeling it.

People want something to blame.  No one wants to walk away from a tragedy like this with no answers, but in times of great evil, sometimes there simply are none.  However, the people who post horrible hate like I quoted above are no less evil - in my opinion - than the man who walked into that school and began firing.  Instead of turning his sights on the innocent children of Newtown, CT, he's turning his sights on children like mine.  How is that okay?  How is that any different?

We cannot allow collective fear to make it acceptable for the masses to turn on our children.  They don't know our children.  They are basing their "knowledge" on the actions of one evil man who happened to just share a diagnosis with our kids.

I can't hide my boy.  Instead, I need to change the world's perception of him.  I need to show them who he really is and what a wonderful, inspiring person they will find in him.  We can't hide ourselves from the world, hoping to stay safe in the shadows.  We have to get out there and change the perceptions of our children.

A monster took 27 wonderful people and children from us last Friday.  That monster had autism, but autism wasn't the reason for his crime.  Autism didn't make him plan out in a cold and calculating way the murder of all of those people.  Autism had nothing to do with this tragedy.  Autism didn't pull the trigger.  Autism didn't take those precious babies - including one with special needs and his aide - away from us last Friday.

An evil person did that.

Tuesday, December 18, 2012

Actions Speak Louder

Yesterday, I posted about Jack's first positive experience with Santa and how - through the kindness of 3 extraordinary volunteers - we were able to create a bit more good in the world in the shadow of so much darkness.

I was actually surprised that it got very few readers, but then it hit me - the majority of posts right now are dealing with so much negativity.  They are handling the issues like the fact that there is no link between autism and planned violence (because there's not), and how broken our mental health care system is currently (because it is), and how one viral post - which I choose to not acknowledge directly either way - is, depending on your view, very real and necessary or very damaging and self-serving (and I have an opinion, but I don't like to talk about other bloggers directly, thank you very much).

And if you follow me on Facebook - which you should! - you would know that I touched on all of these just briefly in the past few days, with the exception of the viral post, which I've chosen to just let go.  However, beyond that I am not going to do a week's worth of identical posts on the injustices of the world, because let's face it - my reach is only so far.  People read words on a screen, process them for a few minutes, and go about their merry way.  I might educate some, but I am a small writer.  I don't have a following of thousands of readers and Facebook followers; mine numbers in the hundred or so range.

I also don't like to jump on the bandwagon of sensationalism.  Instead, I choose to carefully consider - rather than screaming to get a post published - the implications of my words, because it's in times like these when the world feels an open wound that we need to be especially kind, especially careful, and we need to consider our words more than ever.

It also probably means that I'll never have thousands of readers, but that's okay.  I don't write to reach the masses on such a scale - though if it happens I'll welcome everyone with open arms.  Rather, I write to educate, to inspire, and to make the world a better place - one person at a time.

And really, the posts like this one are the ones that typically have the least impact.  The ones that do are the ones in which I place a personal, emotional face on my experience and that of my son.  They are the ones which show my boy for the wonderful, beautiful person he is.  The ones that describe the light within him that is so contagious that it illuminates everyone he encounters.

If we're wanting to convince people that autism and planned violence are not synonymous, it is those aspects of our children that we must present.  Rather than railing on about pundits and the media and the misguidedness of it all - all aspects of our culture that we will not have an impact on, because the media will always latch on to what will produce attention, either positive or negative - I believe that we can have the most impact by simply showing who are children really are.  By putting a human face to them.  By showing just how amazing each one is.  By showing that this isn't the portrait of autism you see in the news and that this is autism's reality.

Even more than this, we cannot hide behind computer screens and blogs if we want to correct the ills of the world.  In order to make the world a better place, we must take action.  We have to get out in the world and get our hands dirty.  We have to volunteer and speak with people face-to-face.  We have to not be afraid to bring our children with us into this world, because each person who experiences a few moments with my boy - or any of our children - is forever changed for the better.  The seeds of understanding are sown with each smile and laugh and flap of his hands.

He is the world's best teacher of just what autism really is and what it is not.

I also know that - at least at this moment - my boy lives in a world far darker than what I would want for him.  Words on a computer screen won't change that, but my involvement will.  I know that each time I help someone - just one person in real life or online - that I'm helping to shift the ratio of good to bad in this world.

And you can, too.

I say it over and over again, actions speak louder than any blog post, any Facebook status (sorry, Mark Zuckerberg), or any Tweet.  My blog posts will be largely forgotten in the future (who actually remembers a post I did a year ago?), but my actions and kindness will not.

Really, if we're talking about what we should be talking about - the children, the staff, and the victims and the wonderful people they were - wouldn't they want us to focus on each other rather than anger and division?  Like the aide that gave her life trying to protect the little boy she assisted daily, wouldn't they want us to give fully of ourselves in this time of such need?  In this moment of such great sorrow for our nation, would they not want us to embrace each other and lend our neighbor a hand?

So, I challenge you - especially now in this time of sorrow, pain, and need - to get out and make an impact.  Give of your time.  Give of yourself.  Think small scale, but watch it have a bigger impact that way.  Donate just a few toys to Toys for Tots.  Clean out your pantry and donate to a local food bank.  Help a struggling neighbor provide her children a Christmas.  Reach out to a newly diagnosed parent and offer your support.  If there is injustice in the world because nothing exists to help our children, get out there and create it!  That's what I've had to do.

Remember, my friends, actions speak louder than words.  Does the world need to know that autistics are not prone to planned violence any more so that the average person out there?  Yes.  Does writing about it have the most impact?  NO.  Rather, showing the world our children, our families, and ourselves is the best way to show everyone how wonderful they are and how misconceptions about autism are just that - misconceptions.  By showing people this face, I'm showing them all that autism is a beautiful little angel.



Sound idealistic?  Maybe, but call me naive if you wish.  I'd rather be naive and have an impact than stand by silently and watch.

Monday, December 17, 2012

Restoring the Faith in Humanity

This morning, as I gave my heart a hug as he squirmed, a kiss on the top of his delicate forehead, and helped hoist his little 3.5-year old frame up a set of school bus stairs far too large for his little legs to handle, I thought about what I would want to say to the world this morning.  This morning when so many, like myself, are placing our children on the bus, watching them take their seats - or in the case of my boy, get strapped into his seat - and standing at the end of our driveways watching that yellow bus fade into the distance, praying to God that our children return to us safely at the end of the day, what words do you need to hear?  What words do I need to say?

There is much that could be said about evil, cruelty, political issues, and the victims, but that doesn't help our hearts as we watch our children drive away or hop out of our back seats at carpool.

What we need is hope.  Faith.  Something to restore our confidence in humanity.  Something to remind us of the good in this world.

---

As many of you may know, Santa visits have never gone too well in my house.  Santa himself is rarely the issue, but the environment around Santa makes or - more commonly - breaks the experience.  When this year rolled around and, once again, all of the "Special Needs Santas" didn't quite fit my boy's needs, I decided that if no one would create the experience my boy needed to see Santa comfortably, I would do it myself.

At first, my confidence was absolutely shattered.  If you didn't read the following post of mine that was published on the SPD Blogger Network, I suggest you do.  It'll give you the backstory without me rehashing 1000 words worth of it:

Finding Santa

The response to that piece was overwhelming.  Where I had sent out pleas on my personal Facebook page that had mostly gone unanswered, suddenly everyone was trying to help.  I had friends who were actively crowdsourcing for me to find both a Santa and a photographer who would donate their time to some very special children.

I wasn't sure we were going to do it.  In fact, as we approached Thanksgiving and I hadn't booked either Santa or a photographer, I really thought it wasn't going to happen.

Until one afternoon.  I received a text from another special needs mama friend of mine that she might have a Santa for me.  I smiled, but wasn't too optimistic.  It just hadn't panned out yet - every Santa wanted to either get paid or didn't have any interest in coming out to our therapy clinic to meet our children at their level - in their environment.  Nevertheless, I awaited his phone call.

A couple of days later, it came.  Not only did Santa want to do it, but this was just the kind of thing that he and Mrs. Claus live for.  They both go to one of our local children's hospitals on Christmas morning to hand gifts out to the children.  They were eager to come help out.  They wanted me to tell parents not to force the children to come to them, that they have a few tricks to help children feel comfortable and to just give them time to decide to come to Santa.  That Santa would do what each child needed to make the experience a happy one.

I knew I'd found the right guy in a red suit.

Now all I needed was a photographer.  I can wield a camera, but not with an skill or artistic vision.  I was prepared to take pictures of families - with their cameras - if need be, but my hope was to find someone who might be able to capture what is the beauty of our children just as they are.  As it turns out, my stepmom was able to come through on this one.  She connected me to a wonderful lady who was more than willing to come take pictures for us and provide families with digital pictures afterwards.

---

As the morning approached, I was feeling anxious.  Did I set this up right?  Would everyone get what they wanted out of the experience?  The Special Needs Santa had become more than just a project for Jack; it was a way to help a group of children whose own community of advocacy organizations had yet to serve in this way, because most "autism-friendly" Santas still operated under the assumption that our kids will do okay around large groups of people.  That's just not the case.  They need familiarity, quiet, and a Santa who doesn't expect children to be someone their not and rush them through the process.

I got to the clinic and - with the help of Jack's former OT - we got the place as Christmasy as we could. The photographer arrived and seemed very nice and understanding about what most of our families would want out of the experience.  I was feeling a bit more optimistic, until I saw Santa.  As he and Mrs. Claus strolled through the clinic door, I was over the moon.  Both were clad in velvety red outfits with white fur adornments that looked as authentic as the real thing.  Santa himself had a real white beard and long white hair, just like the Santas of our childhood memories.  It was as if the good St. Nick had stepped right off of his sleigh and into the front door of Jack's therapy clinic.

Santa smiled and gave me a hug.  My fears and anxieties instantly melted away.  I was ready.

Jack was the first - the guinea pig, if you will - of the group.  Now, this year Jack still doesn't get Santa, but we worked with him on labeling Santa so he can identify a picture of Santa if he sees it.  He doesn't know that Santa brings presents on Christmas Eve or any of that.  Jack's also never been able to answer a "What do you want for Christmas/your birthday?" type question, so we worked with him on making that a prompt with a rote response that he could say during his Santa visit.  After much drilling, we got Jack to where when he was prompted with "What does Jack want for Christmas?" he could say "I want toy microwave" (one of the many things he will be receiving this year).  Of course, it sounded monotone and robotic, but that was just fine by me.

As Jack entered, he seemed initially apprehensive.  However, once he saw that he was at his clinic, going into his therapy gym with his Mommy and Daddy (a novel concept in and of itself - we never go in there!), he seemed more at ease.  He did take a minute or so to warm up to Santa, lingering near me and not looking in Santa's direction.  I got down on the floor with him and reassured him that he could take his time.  Santa seemed to know what to do.  He pulled out his phone and said, "Would you like to see a picture of my reindeer?"  Well, Jack has never been one to turn away a chance to play on an electronic device, so he tentatively inched his way over to Santa to take a peek.  Sure enough, Santa had a picture of himself with real reindeer (and don't ask me where you find real reindeer in N. Georgia - I have no idea)!

After a minute or so of standing next to Santa, Santa eased Jack onto his lap as Brian and I began talking to Jack.  Santa realized early on that Jack would only respond verbally to us, so he let us do the talking and sat back, smiling and nodding with each thing that Jack said.  Of course, Jack did not respond to any of our well practiced Santa visit prompts in front of Santa.  In fact, he was nearly silent, except when asked color questions by Brian or I, like "What color is Santa's beard?" or "What color is Santa's coat?" with a visual prompt like a point.  He could then gleefully answer "White!" or "Red!"

But the picture below says it all...he was happy.  My God, people - he was happy!  He was comfortable and content and while he didn't get the purpose of the exercise, he wasn't in any kind of distress.  That was the difference between this year and the last.  He was happy.



The photographer stayed busy snapping picture after picture - which I haven't gotten back yet since it was only yesterday - capturing some precious moments with our boy and the jolly old elf.  We even managed to make it into the picture for the one thing I truly wanted this holiday season - a picture of my family.

As my boy and my husband departed and the next families rolled in, the same scene was repeated over and over again.  There was no overwhelming apprehension.  There were no meltdowns.  There was no crying or screaming.  There were just families getting what they had never gotten before - pictures of their children and families with Santa Claus.

All because one man, his wife, and a photographer said that they would donate a slice of their Sunday to helping make the holidays bright for some very special children.  That is what kindness and good is.

As the day wound down and the last family trickled out the door, as the clinic was reassembled into the place it normally is, and as I dropped the donated toys at the Toys for Tots bin in the Publix across the street, I felt as though my heart might burst.  Seeing all of those children feel comfortable and enjoy their experience with Santa was just - well - there are no words.  No words to adequately describe it, except that I truly felt blessed and privileged to be a part of it.  To be a part of something decent and good and inspiring in this season and at this time when we need so much more of that.

---

It reminded me that there are good and decent people in this world.  That is what we must remember in these times of great sorrow.  We must not let the actions of one destroy our faith in the whole of humanity.  We must remember that there is love and decency and kindness and good in this world.  We must not shelter our children from all of the good for fear of the bad.  Rather, we must hug them a little tighter, kiss them an extra time no matter how much they resist, and send them forth to help make this world a better place for their presence within it.

Friday, December 14, 2012

Unspeakable

Normally I don't post on weekends or do two posts in one day.  Today, I had to do it.  I have to get this out.  I have to release it so I can let go.  I have to, or else putting my baby boy on the school bus on Monday will be impossible.

I had to turn the TV off.  I couldn't watch anymore.  A year ago, it would have been different.  It would have been tragic - unspeakably tragic - then, but now it's just too close.  We're talking about children at an elementary school.  My boy has been in Special Needs Pre-K for just under a year - having started in March - at our local elementary school.  He rides the bus.  He walks the halls with his para-pro and teacher.  It's a place we've come to know and love and we've made it a home.

He's not yet even 4 years old.

These were babies.  Someone's babies.  As much as I can try to wrap my head around it, I just can't.  It defies logic.  There is no sense to it.  Just horror.  Only horror.

By the time it hit the news, my boy was home.  He only goes half-day.  I'm not sure I could have resisted the urge to go get him at school if he were still there.  I at least would have had to ask his Grandma - who works in the front office - to go check on him.  To just reassure me that he's okay.

Because it's too close.  Because I feel horridly thankful that it wasn't my boy's school.  Because I want to be able to send my child on the school bus each morning and know that my child will be safe and waiting for me when I come to pick him up.  Because I have to worry about too many other things - far too many other things with my sweet boy - and worrying about my boy's safety at school...I just can't.  I really can't.

But I will.  There's no way that I can't now.  That innocence is gone.  No longer does school seem the safe haven - the bastion of childhood and growth and learning - that it once was.  And no, this isn't the first, but it is with children so young.  Children so close in age to my sweet angel.

I speak of religion so very rarely here on my blog, on it's Facebook page, or even on my own personal Facebook page, but in times like this I have to turn to prayer.  Because nothing else makes sense.  Because no logic will help me here.  Because the only hope left is to pray and to support one another.  So, in an extremely rare public show of my Catholic faith, I pray to our Blessed Mother - as she knows what it is like to lose a child and feel the joys and pains of motherhood - that she can open her arms to these sweet babies and comfort the parents across the nation, especially those who lost a child today.  That she can intervene on our behalf to help heal the hearts of the grieving parents across our country tonight.

So, hug your children tighter (even if they resist, like mine will).  Say that you love them over and over again (even if you don't think they hear you and/or understand).  Count your blessings tonight (even though you might have a great many challenges).

Tonight, every parent - SN or typical - is united in our grief.

---

My prayers, my sympathies, and my heart goes out to the families who lost a child today in CT, and to all parents who are feeling this same sense of loss as I am.  We will all be holding our children a little closer tonight. ~ RM

Thursday, December 13, 2012

Roll Off Your Back

After a day of different things going on - lunch with my Dad and stepmom, a time change for physical therapy, and a last minute scramble for a therapist gift - we headed to the pool for Jack's second to last session with his aquatic physical therapist.

The session started out well.  Jack - as has been his routine lately - gets right in the pool and starts flinging water in the air so that he can watch it fall.  He's always been a big visual stimmer, finding joy and solace in watching water droplets, sand, or anything else that catches his eye fall to the ground.  In fact, it's this intense focus on the movement of objects that led us to say when he was an infant that he was destined to be an engineer like his mama.  We didn't know anything about stimming at the time, so we assumed that the way he liked to watch things fall and spin repeatedly or the way he cut his eyes as he walked was because he was just figuring out how they all worked.  Now we know that he sees something soothing, comforting, and beautiful in these movements of water, sand, and other objects.

How I wish that I could find beauty in such simplicity.

However, it does create quite a mess.  At the pool, his physical therapist has tried to redirect this into a purposeful - and therapeutic! - activity by making him bend over into the pool, scoop some water with either a child-sized watering can or a cup, and dump it into a bin outside of the pool.  It helps work on his trunk strength as he has to bend and right himself in order to get that oh so desired reward of watching the water fall gently into the bin.  He stands flapping his hands with excitement as his therapist helps him pour the water.  Who says that perseveration and stimming can't be beneficial?

As I sat off to the side of the pool, I heard something that gave me pause.  Now, Jack and his therapist aren't the only ones who use this pool.  It's a municipal instructional pool that is used by the physical therapy company, the city for swimming lessons, and by senior citizens who use it - much as our kids do - for low-impact exercise and strength training.  We're used to the presence of the little old men and women with their AquaJogger belts engaging in water aerobics right alongside our kids' physical therapy sessions.  Usually, they look over and say a kind word or two to our kids, or comment on how cute they are.  I'll admit, many of our kids are really ridiculously cute.

Not today.  Not this man.  Instead, what he said was this:

Hey boy! What are you doing?!?  You're going to dump all of the water out of the pool!

He wasn't saying it in jest.  He sounded truly annoyed.  He was staring and waving his finger - and he was directing it towards my boy.

Jack's physical therapist cut her eyes in his direction briefly, but kept going.  She had to, really.  She - like so many of Jack's therapists - usually don't intervene in situations like that because they're not allowed to say that Jack is receiving therapy.

But that didn't mean that Mama Bear couldn't shoot the old man the dirtiest look that I could.  With senior citizens, I tend to cut them a little slack, knowing that as you age your filters and inhibitions tend to drop a bit.  However, this is my child - my baby - who was doing nothing wrong and didn't deserve a scolding.  Not that Jack was aware of it, but still...

Now, that could have ruined the day, if not for what happened 10 minutes later.

I was still seething a bit over the gall of that man, when I noticed something extraordinary.  It was this:


It may look like an insignificant thing to you - my boy jumping into the pool - but this was huge.  You see, jumping into the pool has been one of his goals since day one of physical therapy.  When was day one of PT, you say?  August 2011.  We have been working on this very skill for almost a year and a half.  In the next to last session Jack had with this therapist, he finally - finally - did it.  He's been jumping for a few months now, but we just couldn't get him to jump into the pool.  Instead, he'd bend his legs and kind of fall in.  It was like he just couldn't get the concept of leaping into the air.  Even with holding his therapist's hands, he just couldn't do it.

Until today.  There he was and suddenly his legs left the ground.  He leapt into the air and landed in the pool with a splash.  I'd been so afraid this whole time that I'd miss the momentous event, but I didn't.  I saw this wonderful, blessed first for my boy.

I couldn't help it.  I stood and cheered.  The other parents must have thought I was nuts, but I didn't care.  I knew just how long it took for my boy to learn how to jump period, but for him to execute this one simple motor action took so much time, effort, and hard work on his part and that of his therapist.

I watched him do it again.  And a third time.  And again.  I snapped pictures like I was the paparazzi.  I cheered with each "SPLASH!" into the water.

By this time, the words of that old man had rolled off my back.  I was riding on the high that comes from seeing your child accomplish something for the first time, something that didn't come easily to him.  As I watched and smiled, I thought that the nay-sayers - the people with nothing kind to say - don't hold a candle to this.  To this moment.  And for all of their unkind words, they are missing this moment, because it's this - this huge leap for my boy - that is the spectacle of the day.

And in that moment, I couldn't have been prouder.

Wednesday, December 12, 2012

Guilt Trips and the Potty

As we approach our bi-yearly Medicaid evaluations - which we do in anticipation of filing for pre-authorization for the next 6 months worth of therapy visits - we are in the midst of discussing goals for that time period.  I must say that I feel more empowered approaching this goal-setting period.  I have definite ideas of what skills I would like to see Jack working towards and I have been more vocal about my wish-list, too.  I guess you could say that I feel more confident moving forward than I did in the past.  I feel confident in my expertise in my child.  I feel more confident in my desires for his goals.  I feel more confident in making goals ambitious.

I was discussing goals with Jack's new occupational therapist, when she blurted out the question that so many of us special needs parents dread...

So, how's the potty training coming along?

I'm sure that I was visibly cringing.  It's not that she meant any harm; she simply wanted to know, but it's a question that I get so frequently from people who are not so well-meaning in their inquiries.

I'm sure that all special needs parents with children in the 3-4 year old range get this question frequently.  I know I do.  Everyone wants to know how Jack's doing with potty training.  Is he still wearing diapers?  Is he using the potty at all?  Are you working on it?

The answers are yes, no, and of course.  

Here's the deal - we are actively potty training Jack.  We put him on the potty several times a day; however, the challenge is keeping him there.  We currently are able to keep him on the potty for an average of about 10 seconds.  Sometimes it's less.  Sometimes it's more.  They're working on it at school.  We're working on it at home.  We're trying to always let him know when he's gone in his diaper and we're trying to help him find a way to communicate that to us.

Yet, everyone has an opinion on the matter.  People who don't have special needs children feel the need to give me potty training advice.  The worst is when I get the following question:

Don't you want him to be potty trained?

No, I enjoy changing diapers on an almost 4-year old.  What do you think?!?  Of course I want him to be potty trained!  The cost of buying diapers for going on a 5th year is ridiculous.  The diaper changing isn't getting any easier.

I also want to go about it the right way.  You see, the first time we tried introducing the concept of potty training to Jack was nearly 2 years ago, before he was diagnosed.  We started noticing that he was peeing right as he got in the bathtub every night.  We thought that putting him on the potty was the right thing to do.  Hell, everyone told us it was the right thing to do.

He wigged out.  We tried potty chairs, potty seats, standing up - anything to get him to do it.  Of course, we didn't understand about sensory issues at the time, so we had no idea that it was tactile issues that were causing our boy to scream when his little legs touched the seat.

Now we know and we take it slow with him.  Despite the advice of well-intentioned people - including a gal who gave a workshop on potty training special needs children that I attended this year - I don't believe in holding him down on the potty.  Doing that only causes anxiety in my boy.  Anxiety and fear leads to avoidance.  We obviously don't want Jack avoiding the potty if we want to be successful with potty training.  

I think that people who don't have children with sensory issues don't understand that our kids won't just break and give in.  In the face of an experience that my child perceives to be unpleasant, he doesn't become belligerent.  He goes into "fight-or-flight" mode.

I've also had many people tell me to just sequester him at home for a week or so and put him on the potty every 10 minutes all day long.  Again, we don't want the potty to be torture.  In order for Jack to actually use the potty, it has to be something he wants to do.  He has to be okay with the experience.  That means easing him into it, taking it slowly, and pushing him when we know he can handle it.  Like with all children, the experience will be easier once he shows some interest.  The other problem with the week-long live-in-the-bathroom concept is this - therapy and school.  I can't cancel them indefinitely until Jack "gets it".

Ultimately, Jack is going to potty train like he does with everything else - on his own time-table.  He'll do it when he's going to do it.  It doesn't matter what parenting books or anyone else says, Jack is going to do it when he's ready.  He's not going to go to high school in diapers.  He will be potty trained, but it won't be as easily or as quickly as his peers, and that's okay.

No guilt trip will make him potty train faster.

So, if someone tells you that their child isn't potty trained, don't judge.  Don't put undue pressure on someone to potty train their child.  Believe me, someone who has a child Jack's age who isn't potty trained has tried just about everything, so making multiple suggestions isn't helpful.  We've tried it all.  Also, don't assume they're not working on it.  I guarantee that they are.  No parent wants to change diapers forever.  I promise.  

Instead, try to be understanding, try to be encouraging, and understand that no one - and I mean no one - knows a child better than his or her parents.  

---

I know I'm not alone in this.  Feel free to share your potty training woes, victories, and other guilt trip pet peeves.

Tuesday, December 11, 2012

A Diagnosis Does Not A Personality Make

Accommodations.  We talk about them with regards to our children.  We advocate, speak out, and try to educate the public when they judge our children.  And they do judge.  At one time or another, our children have all been the target of a stare, off-handed comment, or avoidance because of their behavior in a certain situation.  We try to educate people that our children have autism, it causes them to act in ways that people might not expect, and that compassion and understanding - rather than stares and snide comments - are what is needed.  In reality, adults need to leave the job of parenting to, well, the parents of those kids, because they are the only ones who are privy to all details of the story.

But...there is a flip side to this.  You see, not every behavior can be attributed to autism.  Even though Jack is far too young and - developmentally - light years away from understanding this, I've always felt as though autism cannot be used as an excuse throughout his life.  Sure, he has meltdowns that are beyond his control.  His neurology contributes to that.  He struggles to communicate with others.  His neurology also contributes to that. 

What he cannot do is use autism as an excuse for being a jerk.  That I will not allow.

I say this, because I find that - from time to time - people confuse "neurology" and "personality".  Say an autistic person is very direct and says exactly what they mean all the time.  It's not uncommon.  That's just a neurological difference.  That individual processes and responds to the world in a different way.  We can respect that, take that into consideration, and be understanding.

Take another autistic person who comes off as combative, angry, and spiteful.  Now, neurology can contribute to this, of course, but there's another possibility; some autistic people, like the rest of us, are just assholes.

Now, before I get eviscerated by everyone for saying that, let me explain.  All of us NT people out their have our own personalities.  Some people are unfailingly kind.  Others are very reserved.  Others come across as very outgoing.  Others still are just plain assholes.  Our neurology is essentially the same - we're all NT.

Autistic people also each have their own unique personalities.  "Autistic" isn't a personality, people, not any more so than "Caucasian", "American", or "Female".  Autistic is an identity - a word used to describe a group of people - an identifier that indicates that one is a part of a brilliant group of neurodiverse people with whom we are privileged to share this world.  The word "autistic" indicates that a person is one who has neurological differences that make the way they experience the world unique.  Not less, just different.

Being autistic doesn't dictate all that you are as a person, though.  If it did, we might see that every autistic individual was exactly alike - a cookie-cutter image of each other - but that's not what we see.  They fall along a vast spectrum, just like everyone else.  Yes, falling along a spectrum isn't unique to autism.  In fact, there is a vast spectrum of humanity.

There are autistics who are unfailingly kind.  There are some who are very reserved.  There are some who are very outgoing.  There are others who are just plain assholes.  This applies across the board with everyone - NT or disabled alike.  One good example and one that I'm a bit familiar with is that of the "super-nice-and-caring" Down Syndrome individual.  Jack goes to therapy with a lot of kids who have Down Syndrome, as many kids Jack's age with Down Syndrome have a similar therapy schedule/load.  In fact, I know more parents in real life who have children Jack's age who have Down Syndrome than I know parents with kids Jack's age who are on the spectrum, though I suspect it's because most of those kids haven't been diagnosed yet.  One thing that I hear a lot of Down Syndrome parents complain about is that parents of autistic children tell them how lucky they are because kids with Down Syndrome are "so sweet, good-natured, and kind".  

Now I've never been one to make that remark, but when I've been a part of these discussions the overwhelming response from the parents with children with Down Syndrome is that their children - like all others - can be real pains in the ass from time to time.  Why?  Because they're kids, and kids personalities run the gamut.  So, you can have kids with Down Syndrome who are the sweetest, kindest children you'll meet, but you can also have kids who are a bit difficult to deal with and who are always trying to rock the boat.

Can people with Down Syndrome be sweet?  Sure.  Can people with autism be jerks?  Absolutely.  Is it because of their neurological and developmental differences?  I'd say it depends.  Of course our neurology makes us - in part - who we are.  Jack wouldn't be the person he is if not for him being autistic.  It has helped mold part of his personality.  Is "autistic" all that Jack is?  Is it the end all and be all?  Is it his personality, his identity, and his neurology all rolled into one?  Not at all.

I think this is where saying that particular personality traits accompany a diagnosis can be damaging.  After all, assuming that autistic people are not empathetic misses all of the wonderful autistic people who show so much empathy that they not only care for others deeply, but they also internalize that pain.  I've spoken with some adult autistics who are so sensitive to the emotions of others, so in-tune to how others are feeling - even if they can't put their finger on the exact name of the emotion, that they acutely feel right along with the person they are observing.  They internalize that emotion and it flows forward in a way that most NTs can't understand, either.  Sounds like empathy to me.

On the other hand, I've also heard of some autistics using autism as an excuse for bad behavior.  When someone says something hurtful and then says "It's not my fault - it's my autism", that also takes something away from autistic individuals.  That says that being hurtful is something that goes hand-in-hand with autism, and that's simply not true.  Now, it could absolutely be the case that an autistic person says something hurtful without knowing they have done so because of their difficulty in reading a particular situation or filtering their thoughts.  However, it is also possible - particularly in the case of people who are always "stirring the pot" and who seem to have more vitriol - that they are just jerks.

So, what can we do?  How do we make sense of it all?  Well, we don't.  There's no way you can tell absolutely what is autism vs. personality.  Here is what we can do:

Consider developmental age and adjust expectations accordingly.  A 7-year old who is - developmentally - a 2-year old cannot be expected to think and act as a NT same-aged peer would.  That child hitting or screaming "Mine!" when someone else plays with a desired toy may not be the behavior of a brat, but behavior that we'd expect from a 2-year old.  Keeping the developmental age of a person in mind gives us a better perspective on their behavior.

Discuss before jumping to conclusions.  Has someone said something that offends/hurts you?  Well, assuming that even the most seasoned autism parents don't always detect every person on the spectrum, you can always tell a person that what they said was offensive/hurtful to you and explain why.  If that person seems like they don't give a crap, you may just be dealing with a jerk.  Most adult autistics that I know are absolutely not jerks one bit and if they were to say something that rubbed me the wrong way - or vice-versa - they would be open to a discussion and, in all likelihood, acknowledge where they might have misunderstood, as would I.  Someone who doesn't do that, claiming that their autism is the reason why they acted that way but not attempting to apologize or explain, might just be an asshole.  A NT person who does the same thing might just be an asshole, too.

Remember that we are, ultimately, all subject to the same societal norms and "rules".  A person with a disability who commits a crime doesn't just go unpunished.  Rather, attempts are made to determine whether or not a particular behavior is a manifestation of a disability and that is considered when determining consequences.  While making a social faux-pas isn't a "crime", it is important to remember that all behavior has consequences, whether we intend to engage in that behavior or not.  If your child has a meltdown every night in their room and breaks his/her TV, and then you replace it and the same thing happens again, you might not put a TV back in your child's room.  The meltdown isn't something your child can control, but the resulting behavior caused something undesirable to happen.  Breaking the TV - while not intentional - has consequences.  The things we say and do have a consequence and all people - NT or autistic - need to understand and acknowledge that.

Help teach your child social rules and good behavior.  Unfortunately, our kids function in a NT world.  As much as we might want the world to change for them, it won't.  Nor can we isolate ourselves from the world.  What we can do is help our children navigate their social worlds through teaching them social skills.  A good example of this is the age-old Southern ritual that I was forced into in the 7th grade - Cotillion.  We were taught to do all sorts of things that seem silly to most kids, like bowing/curtsying, using the correct fork at a meal, and ballroom dancing.  Do any of these things serve a real purpose in the world?  Hell no, but knowing how to do them helps you fit in within certain contexts.  It helps you pass as "fancy".  The same with our kids.  Social norms might not make any sense to them, but knowing how to navigate the social world will help them maintain a job and relationships with loved ones and peers.  Teach your child that they can't control the behavior of others, but they can control their own, with practice.

Don't let your child's disability be an excuse.  This goes not only for social situations, but for any other skill, really.  There are obviously going to be times when your child's unexpected behavior needs to be understood compassionately by others, but there will be times when your child is just being a pain in the butt and it will have nothing to do with their diagnosis.  Most parents are pretty good at picking out when it's just "being-a-pain-in-the-butt" and when it has to do with autism.  Don't let autism be an excuse for the "pain-in-the-butt" behaviors.

Remember that no one's personality is absolutely dictated by their diagnosis.  There are NT jerks.  There are autistic jerks.  There are kind NTs.  There are kind autistics.  Personality - while influenced by a diagnosis - isn't controlled by autism.  There are good and bad people within every community.

Meet half-way.  It doesn't need to be all "conform" on the part of autistics, nor does it need to be all "accommodate" on the part of NTs.  An ounce of understanding on both sides goes a long way.

We all share this world.  We all have to manage a sort of give-and-take to make it work.  We should be understanding and help each other learn and grow as individuals.  Autistics sharing their point of view have a lot to teach us NT parents about raising children with autism.  On the other hand, we can also share with autistics how we see the world.  Neither way is right or wrong.  Being NT doesn't automatically mean I'm wrong or right.  Being autistic doesn't automatically make someone else wrong or right.  What it means is that we have to share ideas respectfully and work together to make the world a better place for us all and for all autistic individuals, including our children.  That takes understanding.  It takes compassion.  It also takes acknowledging that we are all unique.

Monday, December 10, 2012

Cold and Flu Season and the Special Needs Mom

I'm battling another cold.  At least, I'm really hoping it's just a cold.  It keeps getting worse, but I'm just going to chant "It's not the flu, it's not the flu, it's not the flu!" and hope that keeps the flu away.

Illness is a fact of life.  Living with a preschooler - especially one who attends public school with hundreds of other children - seems to eliminate any and all immunity you once possessed.  Thus, this cold and flu season has been particularly rough in my house.  It seems like we've been battling cold after cold after cold.  I'm sure stress wears down my defenses, too, but the most likely culprit is the bombardment of infection I get daily from my own kid.

Now, illness sucks whenever you get sick.  No kid wants to be laid up, unable to play.  Even as a kid, there was no joy in having a sick day.  I didn't want to miss school and have to stay in bed all day, our old microwave-sized relic of a humidifier slowly dampening the side of my bed as the day passed by.  What can I say...I was a nerd, too.

Sick days have evolved as I've aged.  I never remember getting too terribly sick in college.  The first time I remember getting sick enough to keep me home and in bed was a few weeks after I had moved into my first apartment.  That first bout with illness, I was really concerned.  After all, I had never had to truly care for myself when I was sick before, but as an adult my health and welfare was entirely my responsibility.

I thought surely I was going to die, but I actually weathered that first illness alone very well.  In fact, I think it was easier being sick as a single adult than it is being sick as a kid or as a married adult.  As a single adult, no one cares if you can't get out of bed.  The only obligation you have is to yourself.  So, if you have to spend 3 days camped out on your living room couch watching Star Wars and eating wonton soup (thank you, Chinese food restaurant, for ensuring I did not starve), nursing a cup of hot tea and a bottle of NyQuil, then so be it.  Hell, at that time I lived on the ground floor with my apartment facing a wooded area, so I could even get away with letting my dog outside in my pajamas.  Your only obligation is to keep yourself alive and progress towards wellness.  Not that I ever enjoyed being sick - I hated missing work - but I always found it easier to be sick at that time.

Throw a spouse and a child into the mix and the situation gets more complex.  Make that child a special needs kiddo and it's even harder.

Sure, my husband is understanding, if not slightly antagonistic.  He's really getting a kick out of the fact that I've lost my voice at the moment.  He helps out where he can, but the reality is that he has to go to work, too.  My job - on the other hand - is being Jack's caregiver.  I can go back to sleep once Jack has gotten on the school bus, but I do have to go pick him up at school 4 hours later.  After that, he has to go to therapy.  These things have to happen regardless of whether or not I'm feeling well.

Unfortunately, Jack doesn't understand "sick", either.  He still needs help with his sensory diet.  He still needs to be crashed or swung or bounced.  Meanwhile, all I need is sleep and medication, both of which aren't really in the cards while Jack is running around the house.  Jack also has no mercy when I'm sick - his needs still take precedent.  He needs to be fed, changed, and chauffeured around as always.

Short of plopping Jack in front of his iPad all day - a prospect that he would welcome, I can assure you - I have to find a way to tough it out.  I can't just kick my feet up and watch Star Wars until my fever breaks.  I have to be like the Little Engine that Could..."I think I can, I think I can!"

Now, my hope is that the onslaught of infectious disease will subside as Jack gets older.  In the meantime, I'll keep my pantry full of packets of Egg Drop Soup, my fridge full of orange juice, and a medicine cabinet stocked with Sudafed and NyQuil, because DayQuil doesn't contain the good decongestant anymore and I only continue to use NyQuil for the sleep inducing aspects.  I'll also keep the iPad good and charged.

Friday, December 7, 2012

This Christmas

As I look back at last Christmas, I can see that it was a bad year for me.  I was in a dark place around the holidays, full of the realization that my Christmas with my boy wasn't going to match the postcard image I had carried with me ever since the pregnancy test came back positive.  However, I was determined to fake it, and fake it I tried.  I call to mind a Facebook status I posted last December and my Dad's response:

My personal Facebook status, December 20th, 2011 -

To answer the questions we keep getting asked this year...

No, I didn't make Christmas cookies with my boy and he didn't help us decorate the tree. He isn't aware of who Santa is. He won't tear into gifts like the other kids will because he won't touch the wrapping paper or bags. He doesn't get the concept of Christmas or receiving gifts.

That's where he is. And that's okay.

We will, however, be present on his level with him and just BE THERE in whatever form that takes our holidays.  Letters and all.  After all, just being there with my little guy, not the gifts, Santa, or anything else, is what it's all about.

I'm so thankful to my little boy for granting me this perspective on the holidays and showing me what's important.


And, my Dad's reply -

Jack doesn't need a tree or wrapping paper to give a gift of greater value than anything we could ever find at the mall or the mart. He may not be able to articulate it, but he "gets" Christmas better than you or I. Just as God intended it, Jack's gifts are neither wrapped nor reserved for a single, special day. Our loved ones bless us EVERY day with this indescribable feeling of joy, manifested by a simple smile or hug or word or touch. I defy anyone to list a gift they cherish more this year.

In retrospect, I can see that my Dad was the one who was right.  In my attempt to put on the appearance of being okay with our newly realized definition of the holidays, I was missing the true gift of the season - my boy.  I was trying to make him someone he wasn't.  I was trying to get him gifts to encourage a particular skill - like pretend play or fine-motor skills - rather than getting him something he truly enjoyed.  As a result, Christmas morning was disappointing.  Jack wasn't enthralled with his gifts. In fact, he really didn't touch them.

I vowed that I would no longer live in that shadow.

This Christmas brings a whole new perspective.  A new light.  A new awareness of where we are, who our boy is, and our hopes and dreams.  Instead of trying to coax him into being someone he is not, we will focus on the true meaning of the season - joy.

What does "joy" mean to Jack?  It's not the same thing as it is for a typical nearly 4-year old, but does that diminish that joy at all?  Of course not.  It's not about what every other child is doing.  It's about what Jack is doing.  What he loves.  What brings him joy.

That means that Jack will be getting more magnetic letters because - and I know you get this - one can never have too many of the object of one's perseveration.  He'll be getting a timer in his stocking.  He'll be getting - and I'm so excited about this one! - a glorious toy microwave that has a working countdown timer so that he can watch his very own microwave (instead of running my power bill up by insisting on turning ours on).  He'll get visual timers and a wall picture schedule.  He'll be receiving a brand new Super Why! lunchbox and long-sleeved t-shirt.  Many of the toys that I've advised that others purchase for him are toys that are designed for 9-18 month olds.

That's okay.  That's where his play skills are.  That's where we have to meet him in order to find the things which will provide him joy.  We have to say "to hell with age-appropriate!" and look to what he gravitates towards - letters and numbers - to find the toys that will speak to his heart.

Now, has a lot changed since last year?  He's slightly more verbal.  He eats better.  Can he comprehend what's going on during the holidays?  Nope.  Does he understand that Santa brings presents or that Christmas Day should be looked forward to with anticipation?  Not yet.

He hasn't changed.  He shouldn't be expected to change.  Rather, it is my perspective that has changed. I have redefined what the holidays should look like for me.  I have let go of my own expectations and embraced who my boy is.  The holidays aren't about reaching milestones, or fostering skill sets, or ADLs.  The holidays are about happiness, pure and simple.

It should look like a smile tracing a line across my boy's face.  It should look like a flutter of his hands.  It should look like a mess of magnetic letters strewn across my living room floor and the sheer joy of my boy diving into it all.  To me, that would be the greatest gift of all - his happiness.

That's his Christmas.  That's his joy.