"Outside the Box" Parenting #SensoryHop

"Some of the most wonderful people are those who don't fit into boxes."  -Tori Amos

I've given a lot of thought lately to my responsibilities of parenting in the digital age.  I read an article this week that really got me thinking.  The article warned parents to be careful about over-sharing their children’s lives online, because once something is put out there in the virtual world, it can never be taken back.  The writer asked a question that really made me pause: How would you feel if your parents had shared the same about you when you were a child?  I try very hard to maintain Ben’s privacy on this blog.  I have changed his name and try to include pictures that only show his back or profile.   I try to share stories and experiences that would not shame, humiliate, or embarrass him if he were to read it one day.

And yet, I believe my responsibility to him as a mother extends beyond simply protecting his privacy (though his privacy is extremely important).  Ben is different from me because he is autistic.  This difference is not inherently better nor worse…just different.  I was a child who sought to conform, to follow the rules, and to please the adults in my life.  I succeeded in school by blending in, keeping quiet, and following directions.  My son seeks also to follow the rules, and please the adults in his life.  However, rather than blending in, he stands out, and when he cannot follow the rules and please the adults, he becomes frustrated, anxious, and sad.  As I tell his story through this blog, and as I make life decisions for him as his mom, I must do so knowing that the way he perceives the world is fundamentally different then the way I do.  He is his own person.  And if I make decisions for him based on what would work best for me, I am not making decisions that are right for him….

It’s human nature to assume that others perceive the world the way that we do.  We see the world through our own unique lenses, our own sensory filter, and we unconsciously assume others feel as we feel and want what we want. 

I was reminded by a wise OT and SLP this week that my boy processes the world in his own unique way.  In school noises in the hallway compete for his attention as the teacher presents a lesson, creating a noisy swirl around him, and he loses focus.  At home we sit down to do homework, but children playing outside, the poster on his wall, and the cup of colorful pencils on his desk compete for his attention as we work to finish his sight word page.  Ben lives in a constant state of hyper-arousal, which can translate into extreme joy when he’s happy that can quickly switch to angst and frustration when he becomes upset or overwhelmed by his environment.  Most of us live in a relative state of calm.  Feelings of anger, frustration, stress, sadness, or joy usually creep up on us slowly.  Ben flies between the extremes all the time.  There is nothing gradual about his emotions.  He can be excited one moment and crying the next.

And so I try to imagine his world.  A world that is louder, brighter, and often harsher than my own.  My brain automatically filters out extraneous sensory information so that I can focus and get my work done.  His brain does not.  His brain lets all the sensory information in, and this can fatigue him quickly.   

I try to imagine living all day with the volume on life turned up to the loudest setting.  I try to imagine a day, or even an hour, in his little shoes. And when I do, then my little guy becomes a superhero in my eyes.  Because, every day, when I wake him up in his bed, he rubs his eyes and gets up without a fuss.  Every day he walks into school with a smile on his face, ready to face the day.  For Ben is an eternal optimist.  Despite the mountains he faces in his day, he rarely complains.  He does his best.

So here are five truths that I am going to try to remember as his mom.  I can’t promise to get it right every time, but I’m hoping that by recording them here, I can come back to them and remind myself as needed.

1)   My priorities are not his priorities.

When I ask Ben about school, I used to ask him about what book his teacher read to him that day, what story he wrote during writing workshop, or what he learned in math.  Ben wanted to tell me what he ate for lunch, which friends he played with at recess, and what projects he did that day during art class.  When I changed the conversation and followed his lead, we had a much more animated and productive conversation.  In the past the conversation would fall flat.  Now I’m getting a glimpse into his day because I am learning to follow his lead.  He even told me about a book he heard on Dr. Seuss’s birthday without me even asking!

2)   I am his mom first.

Those of us who are teachers often have a hard time turning off the “teacher talk” at home.  My educator friends have told me that they use their teacher voices on their husbands (who are none too happy about this).  My natural reaction is to approach Ben as I would a student in my classroom.  This just doesn’t work.  When we would read books together in the evening, I would try to guide him through a beautiful lesson with a carefully crafted teaching point, but he just wanted time with his mom.  So now we meet in the middle.  I stop worrying so much about creating the perfect lesson for him and focus instead on building the love of reading and having him associate reading with snuggles with mom, wonder, and joy.  He still reads to me, and I read to him, but rather than making every moment a teachable moment, I’m much more focused on creating special memories and positive associations with books.  He has an excellent teacher at school who is providing him with the curriculum support that he needs.  I can reinforce as a mom by making reading feel fun, safe, and enjoyable to do while building his confidence and independence.

3)   I need to let go of the urgent stuff and realize what’s really important.

It’s easy to lose perspective and forget how far we have come.  I remember the first unprompted “I love you”.  It wasn’t too long ago that Ben would only communicate with us to ask us what he needed.  Back and forth conversations weren’t happening at all.  I remember the moment when Ben asked his first conversation-starting question that wasn’t related to his basic needs. Those things happened just over a year ago.  But yet, now, when he wants to talk to me, too often I’m busy with schoolwork, or cleaning dishes, or other distractions.  I’m trying to be mindful to stop what I’m doing, and give him my full attention to his silly stories and his “Guess whats?” so that he knows his ideas are just as valuable and worthy of my time as everything else that competes for my attention.  Last night, as I tucked him into bed, he leaned forward to give me a kiss on the cheek.  These are the moments that matter.  The rest can wait.

4)   I need to see his strengths first.

Ben faces many challenges that can overwhelm both him and those who work with him every day.  It’s human nature to focus on the weaknesses first, but I’ve watched my little guy quickly become defeated with this approach.  One night I made him erase a sight word three times in an attempt to get the letters straighter, smaller, and following the correct pathway.  Each time he wrote the word he became more and more agitated as my frustration crept higher and higher.  The next night I changed my approach, encouraging his attempts and providing him concrete feedback when needed.  I broke the task down into smaller parts and gave him examples, with a much more positive result.  While we must help our children with their areas of need, we also cannot ignore their strengths.  And so, now, I ask myself, “What is he doing right?  What gifts does he bring to this world?  What does he enjoy doing and learning?” And I begin there.  Ben has an amazing memory and an uncanny ability to imitate voices and sounds.  He loved watching plays on the cruise ship and sings along to show tunes in the car with me every day, so I’ve signed him up for drama classes.  I’m hoping his strengths will shine on the stage, but if they don’t, we’ll try something else.   The point is giving him the opportunity to try.

5)   I need to make decisions for him based on his needs, not based on what I would need in that circumstance.

I am not autistic so I recognize that I will never experience the world the way Ben experiences it.  Even though I make decisions for Ben every day, I have to be careful not to presume to know how it feels to live in this world as an autistic person.  And yet, I can take the time to understand his sensory profile, his processing speed, and his learning style.  And then, rather than dismissing his neurology because it is different than mine, I honor his needs whenever I can.  When I have a decision to make, I try to think about it from Ben’s point of view rather than my own.  If Ben tells me that he does not want to do the ride at Disney because the room is too dark…or noisy…I respect his need and we walk away (even if we waited in line for thirty minutes).    I also have to keep in mind that what may work for most kids may not be what’s best for Ben.   And when I take the time to give Ben what he needs, he astounds me with what is he capable of doing. 

I am a person who functions best with a plan and a clear path.  Ben has taught me that it is okay to take life day by day, to step out of my comfort zone, to consider new possibilities.  And, every time I do, I am amazed at the results.  I may make mistakes, but I try to make the best decisions I can, based on the information that I have at the time.

Because he is worth the best I have to give.

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