The Road To Acceptance

My boy having fun trick-or-treating in his own way on Halloween.      

            Recently my family and I participated in a local walk to support our friends who have a boy with Down Syndrome.  We went to breakfast before the walk at a restaurant where we go pretty much every Sunday.  Our whole family wore matching shirts that had the child’s picture on the front with the phrase “J- Rocks”.  At first I couldn’t figure out why everyone was looking at me, but then I realized what I was wearing.  It made me understand how it must feel to be stared at every day, simply for having a physical difference.  My son’s disability isn’t as immediately obvious as our friend “J-”, but Ben’s hand flaps, his noise canceling headsets, and his aversion to eye contact show the telltale signs of his autism and sensory processing differences.  Over the years I’ve become immune to the looks and the glances from strangers, some of them curious and others a bit more judgmental.  It’s been a long time sense Ben has had a public meltdown, so it’s been awhile since I really stopped to think about how society views disability and how much my own views on the subject have changed.

My road to accepting Ben’s disability (and disability in general) hasn’t always been easy.  Ben was diagnosed with Autism Spectrum Disorder and Sensory Processing Disorder almost four years ago.  It has taken nearly all of that time for me to feel at ease talking about my child’s learning differences with others and to truly see them as just that- differences.  I no longer feel the sting in the back of my throat when I say the word autism.  It has taken years of research and study for me to come to the conclusion that, while my child’s disability brings very real challenges, it also provides him with very real strengths that come with having a differently wired mind.  

I have written on the topic of acceptance before.  You can read about my feelings on the topic here and here.  My definition of acceptance has evolved over the years as I have learned and grown.  To me, acceptance doesn’t mean that we have to like the hard parts of the disability.  It doesn’t mean that we have to stop trying to make life better for our child.  However, we must remember that we are trying to make life better- for our child.  This is very different than trying to make life easier for us, or life more socially comfortable for us.  To me, acceptance means that we love our child without wanting to try to change him simply for the sake of making him more palatable to society. 

            The line between denial and acceptance can be blurry.   Over the years, I have met many parents who are living in the stage of denial.  They want to pretend that nothing is different about their child because they view normalcy as the goal.   The view their child through the lens of the hopes and dreams that they have held since their child has born- the vision of the child they expected to have rather than the child in front of them.  They have been influenced by society’s insidious message that those with disabilities are objects to be pitied, or individuals who have a lower self-worth than others.  While they may acknowledge their child’s disability, they see their child as a project to be fixed.  When their child does something that is outside the realm of “normal”, they feel embarrassment or shame and actively try to suppress these things.  I don't judge those who are in the denial stage.  I was there once too.

            It may appear to the casual observer that those who accept their child’s differences no longer care about their child’s needs, but this simply isn’t true.  Once you reach acceptance, you are aware that your child is different, but these differences no longer matter to you in the way that they once did.  You no longer seek to change your child with the intent of making them seem “less different”.  This doesn’t mean that you don’t help your child overcome the limiting parts of his or her disability.  It’s just that normalcy is no longer the goal.   You want your child to live a happy and fulfilled life, but you realize that the very definition of happiness and fulfillment can look very different than you once imagined. 

When you reach this stage of acceptance, you realize that your entire view of success, happiness, and possibility have completely shifted from what you once knew and understood.  You now see a much more expansive realm of possibility.  And then one day you wake up and realize that it is you who has changed as much (if not more) than your child.   That’s the moment when you know, that no matter how hard things get, it really and truly will be okay in the end.  

Welcome to the Sensory Blog Hop — a monthly gathering of posts from sensory bloggers hosted by The Sensory Spectrum and The Jenny Evolution. Click on the links below to read stories from other bloggers about what it’s like to have Sensory Processing Disorder and to raise a sensory kiddo!

An InLinkz Link-up

Staying in the Sensory Comfort Zone

Ben is cuddling on his bed with Jo-Jo the stuffed monkey.  He is sporting his new wolf hat, under his new fuzzy blanket and with his fuzzy pillow behind him. 

            We all have sensory comforts in life, whether it’s that steaming cup of coffee that gets us going in the morning or the heavy down comforter that helps us to fall asleep at night.  My personal favorite is cuddling in my jammies under a blanket with a good book, especially when soft rain is falling outside.  Most of us adults have discovered our sensory “comfort zones”, and we make adaptations all the time, often subconsciously, to keep our bodies calm and regulated.  We probably learned to do this by ourselves.  Our sensory kiddos often do not.

           

            My son is learning to understand and even appreciate his unique sensory self, but has taken time and lots of conversations to get us to the place where he is at today.  He knows what makes his body and brain happy, and he will tell you when his body feels good or when it feels “wacky”.  My husband and I believe it is our job as parents to help teach him tools for self-regulation (and we rely a LOT on the sensory experts around us to help with this), but at this stage of the game we are more often than not the protectors of his sensory comfort zone.  We grew into this role over time.  We had to learn how to stand up for our child’s needs in a respectful way.  We had to learn to say no, even to loved ones.  And, most of all, we had to learn to take our cues from our child.  We respect his needs, even if causes others around him to be disappointed or momentarily socially uncomfortable.

            When Ben was a younger child, my husband and I would keep Ben in uncomfortable situations just to please others.  Looking back on it now, I realize that I would see the signs that Ben was becoming overloaded, but I would keep him in the situation anyway, either because I didn’t want to disappoint someone or make someone else feel awkward.  However, more often than not, this would end up backfiring because Ben would become overloaded and cause an even bigger social scene that could have been avoided altogether if I would have taken my cues from him to begin with.  It wasn’t until later that I would learn to stop worrying about what those around me were thinking and focus instead on what my child needed most in that moment. 

 On one infamous trip to Sea World with a group of friends, I forced Ben to go into a dark theater to watch a show that I knew would be too loud and scary to him, simply because the rest of the group really wanted to go.  When the underwater sea monster appeared on his stage, his screams of pure fright and terror finally prompted me to whisk him out of the theater, but the damage had already been done.  He would not enter a darkened space for months after.  It was on that day that I vowed never to put another person’s personal enjoyment above my son's sensory needs.  Now when we travel places with friends and family, if there is a ride or situation that is too overwhelming for Ben, one of us will stay back with him and the others will go.  I no longer force him- he knows his limits.  I always offer and give him the choice, and it makes for a much better experience for everyone.  We are fortunate to have a supportive group of friends and family who know what works for Ben and respect it.  

            Ben makes no secret about his sensory comforts.  He loves all things soft and fuzzy.  Lately he has been into collecting stuffed animals (the larger, the better!) and his bed has become overrun with them.  This weekend on a trip to Target, I couldn’t resist letting him have a large blanket comforter with gray faux animal fur and matching pillow.  My husband hoisted Ben into the shopping cart, pillow behind his head and blanket over his body.  “Ah, this feels nice!” he pronounced.  “This feels cozy!  My body and brain are happy.” 

            Our home is Ben’s haven, and he’s more than happy to color, draw, write, or play games all day.  Ben also likes to get out and explore, and as long as we follow a sensory-friendly plan, he has a great time.  Whenever we go somewhere loud, such as a play, we bring his noise cancelling headsets along, and he is able to enjoy the show. Ben loves the theater and can’t wait until his birthday when he gets to see the musical Wicked for the first time. 

We avoid overly crowded places, which means we pay attention to where and when we go on our outings.  When we take Ben on weekend adventures, we’ve learned to go early and leave early.  In fact, we try to get there right when the place is opening.  In recent years we’ve learned to avoid crowded theme parks altogether because they are too loud…too over-stimulating…too much.  Circling a parking lot to look for a parking spot is pure torture to Ben.   Ben doesn’t enjoy riding most rides anyway.  In the past, we’d go to places like Busch Gardens only to have him spend the whole time in the giant sand box.  These days we make a trip to the science museum instead, and he is happy as can be.  When we visit Orlando, we don’t visit Disney, even though it’s less than two hours away.  We’ll go to the Crayola Experience instead.  It’s smaller, less crowded, and has lots of projects for him to do.  What’s not to love?  We’ve learned that three hours are about the maximum that Ben can handle at these parks, and so we go and then make our exit.  Typically we are leaving the park just as the crowds are arriving for the day.  We’ve also learned that Ben is only good for one adventure per day, and he needs a lot of down time after an outing.  If we follow these guidelines, Ben generally has a great time and we all leave happy.

            Most of the time, Ben is a calm and regulated little boy.  We have family and friends who have never seen our child pushed past his sensory comfort zone, and this can lead to confused and hurt feelings, such as when we leave a birthday party early or politely decline an invitation to a certain theme park.  However, we hold firm because we know his limits.  We are teaching Ben to advocate for his needs in a kind and respectful way, even if he can’t always articulate it for himself yet.  As a wise person once said, “We do not want to be his voice, but we will be his microphone.”  Because, after all, he is a human being, not an object made to please others.  It’s tricky to help him learn to live inside the sensory comfort zone while still teaching him to roll with life’s unpredictable moments.  We don’t always get it right, and as I look back on my early parenting self, there are plenty of cringe-worthy moments.   And yet, we keep trying because he is worth it. 

Welcome to the Sensory Blog Hop — a monthly gathering of posts from sensory bloggers hosted by The Sensory Spectrum and The Jenny Evolution. Click on the links below to read stories from other bloggers about what it’s like to have Sensory Processing Disorder and to raise a sensory kiddo!

An InLinkz Link-up

The Hidden Factor to School Success (or Private School- One Year Later…)

Ben and his classmates listen to a story on Literacy Day last year on Halloween.

Last week we had my son’s annual service plan meeting.  Service plans are the equivalent to an IEP in the private school world.  As I sat at the table, listening to my son’s OT, SLP, and classroom teacher raving about how Ben is meeting and exceeding expectations in all content areas, I reflected back to meetings gone by.  My boy, who at age four would cry when someone put a writing instrument in his hand, is now writing full pages most every day in class, and even writing books at home for fun.  As I listened to the SLP describe how they would be raising the expectations for Ben’s goals, I remembered back to that scared mom that I was when Ben first received his autism diagnosis over three years ago.  I never thought I would be in the place where we are at today.  There is still lots of work to do, but I never could have imagined this place three years ago.

We were recently with family who hadn’t seen Ben in awhile.  They commented on how much he has matured, how much more he’s talking and interacting, how calm and secure he seems.  I see it too, now that I am teaching at his school and he visits me for writing class once every three days.  He sits up straight and listens.  He raises his hand to share.  He completes his work without (too many) reminders.  He doesn’t “stand out” in the classroom as I was once told he did. 

As a wise mom once put it, “Now does not mean forever, and never is a load of crap.”

We are getting there.

And, to be quite honest, my goal is not for Ben to look or act neurotypical (our society’s perception of “normal”).  I do, however, want him to feel happy, confident, and successful, both in school and in life.  And it appears that we are on that path.

If someone were to ask me what brought about this dramatic change in Ben the learner at school, from the highly anxious child who counted the days until the weekend, who could not sit still and focus or do hardly any tasks on his own, who could show that he could spell or count at home or with his OT, but not in the classroom, I would say this.

The difference for us was not more therapy.

The difference was not a special diet.

The difference was not a particular intervention program or person or technique. 

And, while all these factors certainly do help (though in all honesty we’ve never done the special diet thing), the one factor that mattered most of all is the factor I don’t think we talk enough about.

Environment.

Ben struggled in public school, yet he is very smart.  It wasn’t that Ben couldn’t do the work being asked of him.  He had difficulty because of where and how he was expected to do it.  This is not in any way a negative reflection on his teachers.  I have personally known and have the highest respect for all of the teachers Ben has had in school.  That is one of the privileges of being an educator myself.   Ben was not getting what he needed in public schools because the public school environment is not inherently designed for the needs of a child on the spectrum.  And, as I've seen time and again, it's not just autistic kids who are struggling in the public school setting.

Here are five reasons why I believe Ben's new school environment has made all the difference for him.  Please keep in mind that each child is unique, as is each educational environment, so each child will respond differently and progress on his or her individual time table.  We all want our kids to succeed, and it is hard to remember that it is not a race. Also, I wish every child had the opportunity to learn in an environment that matched his or her needs, because I have seen what a striking difference it can make for a child.

The following list describes the environment that works best for our kid.  If your child is struggling in school, I would encourage you to look at these factors and see how they are impacting your own's child's ability to succeed.

1)   Smaller Class Sizes

Smaller class sizes mean that teachers can more easily individualize learning, meet with children in small groups more frequently, and provide each child with the support that he or she needs.  Ben is lucky to be in a classroom with only 8 other students this year.  He does not attend a special autism school or a school with an emphasis on special needs (though some children certainly benefit from specialized schools).  We were just fortunate that this class was created and he had the opportunity to be a student in it.

2)   Reduced Demands on Curriculum Pacing

Ben is a smart boy and has always (okay, mostly) comprehended the content at his grade level.  His greatest difficulty was keeping up with the pace demanded of him in public schools.  The teachers in public school are under enormous pressure to follow a curriculum roadmap and to “get it all in” on a predetermined timeline.  They must move forward in the curriculum, regardless of whether or not all learners are ready for it.  They try to differentiate, but the days go fast and there is never enough time.  Ben needs the flexibility to work at his own pace without feeling pressured to perform and “move on”.  Surprisingly, I have found that in this more relaxed environment he is actually working faster (almost too fast).

3)   Predictable structures to the day

At Ben’s school, the teachers spend time each morning talking through what to expect in a day.  This does a lot to help alleviate Ben’s anxiety, because he knows what to expect.  There are also predictable structures and routines throughout the day.  The schedule is not constantly changing, leaving him to wonder about what will happen next.  Ben has always done best in a classroom with a high amount of structure and predictability.

This year, his classroom teacher also taught in his classroom last year, and his classmates are mostly the same as last year, so the transition into the year was very seamless.  Typically we have to spend time at the beginning of the year talking Ben through what to expect in the new classroom, with the new teacher’s procedures and expectations.  This year, he already knew, and that has made a big difference in his adjustment period to the new year.

4)   Social Learning Is Valued Equally to Academic Learning

Because of the academic demands in public schools and the pressure to perform well on standardized tests, time in the classroom to discuss social skills has dwindled.  Teachers worry that if an administer were to walk into their class and witness something not academic, they would be marked lower on their evaluations.  In the private setting, the teachers have more freedom to talk about social skills.  We have daily morning meetings, which help build class community.  In addition, at Ben’s school, the children eat lunch in the classrooms with the teachers and have more time for center activities and creative play.  This helps to build relationships while fostering creativity and imagination, things that are sadly often missing from the public setting.  In addition, Ben is able to practice the social skills that he definitely needs in a natural, authentic context.

5)   Supports Push Into the Class

Ben’s school follows the inclusion model, so supports such as language therapy push into the classroom.  This allows for more seamless learning.

The moral of the story is this.  Each of us has to make the very personal decision about which learning environment is best for our child or children. Sadly, not all public, private, or charter schools are created equal.  Many parents decide to homeschool, or do a homeschool/private school hybrid.  What is important is that your child feels happy, confident, and successful.   For now, we’ve found such a place.  At least until middle school…pray for us when we have to cross that bridge...

Welcome to the Sensory Blog Hop — a monthly gathering of posts from sensory bloggers hosted by The Sensory Spectrum and The Jenny Evolution. Click on the links below to read stories from other bloggers about what it’s like to have Sensory Processing Disorder and to raise a sensory kiddo!

An InLinkz Link-up

Making Room for Play

Ben won a tiny toy shark from the treasure box at school the other day.  As soon as we got home, he announced that he wanted to play with it in the bathtub.  I convinced him to put the shark in a plastic container filled with water (aka “ the ocean”) instead so I could get going on dinner.  As I chopped vegetables, Ben wandered into the kitchen and asked if he could put a shark tooth in the water.  Absently, I said yes.  Then, in the background I heard a whole dialogue unfolding centering around the shark losing his teeth to the depths of the sea.  After many trips back and forth to his room, the tub quickly filled with a pile of shark teeth, other plastic ocean creatures, and some shells from the beach. 

“Did you know a shark is a fish?” he asked me during one of his many trips into the kitchen.  “Their teeth are very sharp.” 

And, later, I overheard, “Look- it floats.  What else can float on the water?”

As I glanced over, I suddenly realized that Ben had created his very own sensory bin.  Ben is seven now, so we haven’t had sensory bins around for quite awhile.  I used to make them for him when he was three and four years old, and he certainly had plenty of opportunities to explore these back during this preschool years. 

Ben is a first grader.  He attends a private school that offers more choice and creativity than most schools do these days.  However, I know that his day is still mainly filled with reading, writing, and math tasks.   He enjoys school and he loves to learn.  Sadly, this was not always the case.

We are currently living in an era that is pushing more rigorous academics on children at increasingly younger ages.  As an educator, I watch it happen every day.  I also watch many children’s after school hours fill with extra-curricular activities and additional tutoring to help them catch up and close the learning gap.  I've had parents requesting tutoring for their children starting as early as PreK.  In addition, kiddos like mine with special needs often spend their after school time in additional therapies, such as OT and speech.

There is a saying that play is the work of childhood.

I’ve been thinking a lot lately about the place in a child’s world for pure, unstructured, play. 

Play with no rules and no agenda. 

Play that is unhurried, simple, and pure.

Ben is the master at this type of play.  I protect this precious time in our day because, even though it may not appear academic or rigorous at first glance,  I know its value.

Who are we to say when a child (or adult, for that matter) is too old for play?  Ben may be learning to read, add, and subtract, but he still needs time to get messy, create, and explore…just like he did when he was four.  If anything, he needs it more now than ever. 

Here are five reasons why I believe in the power of play:

1)   Playing builds creativity

Tonight Ben and I blasted off into outer space on his bed.  Yesterday, his bed was a table at a five-star restaurant where he served me food from all over the world.  Play allows Ben to use his imagination and build flexible thinking.  Plus, it’s fun!

2)   Playing builds strong oral language skills

Ben's imaginary play adventures usually come with a story complete with impromptu dialogue for all participants.  Long before Ben was able to hold a pencil, I taught him how to tell stories.  We would weave tales together, “One day, Ben set sail on the high seas.  But then, a pack of huge, angry sharks attacked the ship….”  When I tell stories with Ben, I always try to use rich vocabulary.  He loves to use words like gargantuan instead of huge, and it makes our stories grander, more suspenseful, and just plain hilarious!

3)   Playing allows for creative problem solving

So often I hear Ben working through social issues through his play.  After reading “Charlotte’s Web” as our bedtime story, I overheard him pretend cooking “wild pigs”, while talking to his “pet pig”.  This was obviously helping him to come to terms with eating meat, an issue Ben worried about throughout the read aloud as Wilber grappled with the fate that pigs face.   Ben loved Wilber's character, but he also loves his bacon.  By distinguishing wild pigs from pet pigs, he was coming to terms with this concept in his own mind.

I’m grateful that play and exploration can take a front stage in his life.  I believe that these opportunities to play, without an agenda, and without direction from any grown-ups actually have huge academic and social benefits.

4)   Playing builds perseverance

Ben loves doing projects that he dreams up from his imagination.  His crayons, scissors, tape, paper, and other supplies are easily accessible on his writing table.  He uses these materials to create projects all the time, with no direction or prompting from me.  Often he gets an idea in his head, but making the idea become a reality can be a challenge.  Tonight he wanted to wrap a piece of paper into a tube shape and tape a quarter into the viewing area.  Then, he wanted to glue to tube so it projected from the paper in 3-D.  The finished product looked something like an elephant’s trunk with a quarter for a nose.  Ben used to get very frustrated when he couldn’t get things to work just the way he wanted them to (such as when his train tracks wouldn't connect just right), but these days he’s learning to work through these minor difficulties without big tears and frustration.

5)   Playing builds an enthusiasm for learning

Ben feels a lot of pride and satisfaction in his projects.  I let him hang his artwork on the walls of his playroom and pretend it’s an art gallery.  He loves taking me on tours, and charging me a quarter to view his masterpieces.   Ben loves to create, explore, and invent.  I don’t tell him to do this- he comes home eager to get started.  Sometimes when I call him to dinner, he’ll say, “I’m working!” and he truly is.  I can think of no work that is more important.

How do you encourage play in your child's (or your own) life?  I'd love to hear your ideas!

Welcome to the Sensory Blog Hop — a monthly gathering of posts from sensory bloggers hosted by The Sensory Spectrum and The Jenny Evolution. Click on the links below to read stories from other bloggers about what it’s like to have Sensory Processing Disorder and to raise a sensory kiddo!

An InLinkz Link-up