Day 17: Acceptance is Learning and Growing

My post today is a bit about Ben, but more about my reflections of my time as a classroom teacher.  Whenever I learn about autism or sensory processing, I first think about this new understanding from the perspective of helping my son, but then I think about the larger impact in my work as an educator.  The techniques and truths that I have learned will benefit more than just my son.  

Today's post is a self-reflection.  As with most of my posts, it is based on my unique perspective and experiences, but I hope that you can gain some insights from them that can translate to your personal circumstance, whether you are a parent, teacher, autistic adult, or simply an interested reader.

Ever since I was a little girl, I’ve enjoyed learning.  That was the major reason that I became a teacher.  I love kids but, even more so, I enjoy helping others learn.  I love watching the look in someone's eye when they "get it".  I love feeling the energy and buzz that comes with learning.

I still work closely with teachers, but I no longer teach in the classroom. 

I thought I did a pretty good job as a classroom teacher.  My students were generally happy and they made learning gains.  I spent lots of time planning with my colleagues.  I spent lots of time thinking through the lessons I would teach.  And, during the school day, I worked hard every minute.  I didn’t sit behind my desk- I was up teaching the kids.  I worked hard after school too.  I was one of the teachers who the custodian had to kick out in the evenings.  I was devoted to my job.  Still am.

After two years of learning about sensory processing and autism, I now realize that if I were ever to go back into the classroom, I would do so many things differently. 

Here is what I know now that I didn’t understand then…

1)   I didn’t understand OTs.

Let me start by saying that I love the OTs in Ben’s life.  They are the critical factor to helping him achieve at school.  But back before Ben's diagnosis, I didn’t understand their role or how what they were doing in therapy directly benefited the students in my classroom.  To my untrained eye, it looked like they were playing games and if I were to be completely honest I probably harbored a little irritation that they were taking time away from the real work the kids needed to do in the classroom.  Now I know I was so, so wrong.  First, OT is fun.  Sadly, if school in general were more fun, kids would probably learn more!  Secondly, the games played in OT all have a necessary purpose.  For example, when kids swing on the monkey bars, it actually builds the muscles needed for fine motor skills, skills like writing essays.  Back then I had no idea about a sensory diet.  I knew that kids needed time to run off their energy, but I didn’t understand the power of a five minute energizer in the class.  I see now how the work that OTs do has a direct impact on classroom academic performance.  If a kid is not in a calm, alert state, learning is nearly an impossibility.  I wish I would have understood the power of Bridges and Brain Gym and the other tools that were put in place early in my teaching career to support the body/brain connection.  I would have used them much, much more.

2)   I didn’t understand sensory behaviors.

As a teacher, I thought I understood student behavior.  I thought I was great at handling behavior “issues” because I almost never had to send a kid to the principal’s office.  I could handle almost anything myself.  I knew about attention-seeking behaviors, students behaviors to gain power and control, defiant and aggressive behaviors.  You name it- I’d dealt with it.  However, I never truly understood the impact of the sensory world on a person’s behavior.  It didn’t occur to me nearly often enough that some of the behaviors that I was seeing were not a child trying to cause me difficulty.  I didn’t understand that the child who fell out of his seat may have been trying so hard to pay attention to me that he literally couldn’t stay in his seat and pay attention at the same time.  I didn’t understand that the child tapping his pencil while he worked wasn’t doing it for the express purpose of annoying me (well- maybe sometimes...).  It was probably his way of organizing his thinking.  If I had understood these sorts of things, I would have punished less and put more strategies in place to support the children’s sensory needs.

3)   I didn’t understand autism at all.

In my time as a classroom teacher, I never had a student on the autism spectrum in my class.  I knew of these children in my school, but they were always in the self-contained classrooms.  If I had been given a child on the spectrum to teach, I would like to believe that I would have read everything I could on the subject so that I could have educated myself.  I would like to believe that I would have sought input from the experts at my school to help me and attended trainings if I could.  These past two years have taught me a lot about autism, and I hope that the lessons I’ve learned would have transferred into my teaching.  I have learned that children on the spectrum need structure and predictability.  They need classroom routines that are posted and stay consistent from day to day.  They are typically visual learners.  They need to be warned before sudden changes in their routine.  Social stories are so helpful, because you can read a story of what’s going to happen, and it helps to prepare them for this change. They are literal thinkers.  Expressions like "This is a piece of cake" are often confusing to them.   I have also learned that autism is a spectrum, and most likely I taught an undiagnosed autistic student at some point in the past and just didn’t know it.  I hope I served that child well.

4)   I didn’t understand IEPs nearly well enough.

IEPs (Individual Education Plans) are written for a student with disabilities to outline the individual goals and objectives for that calendar year, based on the assessment information collected on that child.  When I was a teacher I relied too much on the special education teachers who worked with me to know the child’s goals on the IEP.  I looked at their IEPs from time to time (mainly for their testing accommodations) but didn’t keep them in the forefront of my planning for that child.  I didn’t collaborate frequently enough with the ESE teacher.  I wish I would have utilized the experts in my school more when I had difficulty with students rather than trying to figure out the best course of action on my own.

5)   I didn’t differentiate nearly enough.

As a teacher, I spent a lot of time and energy thinking about how to group students.  I thought about which child shouldn’t be sitting next to which child.  I thought about who should go in which reading group together based on reading levels.  I even thought about how to create assignments for the various learning levels in my room.  But as a teacher I still defaulted (subconsciously) to teaching in the ways that worked best for my own personal learning style.  I think that we often teach others in the ways that we ourselves learn best.  If I were to go back in the classroom now I would talk less and observe my students more in order to find the right teaching style to meet the needs of my unique group of learners.

Teaching is a hard job.  Those who have never taught have no idea just how grueling and also rewarding it is.  Teachers are a blessing and a gift because they touch the lives of our children every single day. 

I am grateful every day for the work teachers do. 

I am in awe of them and seek to make their lives easier whenever I can.

I am so glad that Ben has an amazing teacher and team that works with him every day.  I am grateful that they have the benefit of understanding more about sensory processing and autism then I did when I was a classroom teacher.

There is a saying that when you know better, you do better.  My eyes have been opened to a whole new sensory world, thanks to my son.  

I hope that by sharing my journey with others, they too can learn and grow. 

It will be interesting to see what I have learned in five years' time. 

There's Something Rotten In The State of Florida #SensoryHop

Creating art is a messy process!  

Of all his senses, Ben’s sense of smell is perhaps the most keen.  He tunes into scents and odors that would barely register with the rest of us.  Ben is constantly asking, “What’s that smell like?”  This happens several times a day, often at the most inopportune moments, like when we are standing in line at Target behind a heavily perfumed woman.  His also has a habit of sniffing everything and everyone, from the flower growing on the sidewalk to that before-mentioned perfumed woman in line.

A few weeks ago, Ben started asking the question every morning during breakfast in the kitchen.  “What’s that smell like?”  For the first couple of days, I’d reply, “I don’t smell anything.  It’s probably just the dogs.”  It is, after all, summer, and our hounds love to lounge around outside in the hot sun all day.  After the third day, however, I began to detect an odor, too.  I checked in the refrigerator, but I didn’t see any suspicious products, so I went about my day without another thought.

On the fifth day, I decided to do a deeper investigation.  Ben was perched in his chair at the kitchen table, deeply immersed in an art project.  A huge pile of Ben’s Pre-K papers sat in a messy stack next to him, a visual reminder for me to start his memory book.  Mixed in the precarious pile were art projects from the year, school assignments, and a few stray photos of Ben and his classmates.  I made a mental note to start the process of sorting through those papers later that day.  I’m forever putting off these sorts of tasks, as I’m not very crafty and am often too busy for projects of this sort.

So, when Ben asked, “What’s that smell like?” yet again, this time I agreed it was time to find out....

10 Ways I Parent Differently Because My Child Is Autistic

A few days ago, I was talking with a couple of colleagues at school.  One of them teaches a class with an autistic little girl, and she was thrilled because the girl actually came up to her and tattled on another child.  She was just so happy to see her engaging in conversation and speaking up for herself.  This led us into a conversation about how we approach autistic children differently from neurotypical children.  By the way, when I use the word neurotypical, this simply means people that are not on the autism spectrum.

This led my colleague to ask a question that I think many are wondering but are afraid to ask, “What is it like to raise an autistic child?” I thought I might try to answer her question here.  Please know that I can only speak for my own autism parenting experience, because each family has its own unique set of circumstances.  There is a saying in the autism community that if you have met one autistic person, you have met one autistic person.  I know that many children on the spectrum display much more severe behaviors than what we deal with on a daily basis. 

So, with that disclaimer, I give you…

10 Ways I Parent Differently Because My Child Is Autistic

  1)   I let my kid jump on the bed…

…or at least I did before we bought him a trampoline.  I learned when Ben was very young that he needs to move- all the time.  On this same vein, I never take away his physical outlets as a consequence.  Ben has sensory needs that need to be met.  If left unchecked (as in if he sits too long without a motion break), he can become overstimulated, anxious, or dysregulated, which can lead to intense emotions.  Jumping helps.  So does crashing into a mat.  So does swinging.  And yes, we have an indoor swing in the playroom for this very purpose.  Many neurotypical children enjoy swinging, jumping, and crashing.  For Ben, it is a necessary as eating, breathing, and sleeping. 

  2)   I pack him the same lunch every day

Yes, I want my child to have variety in his diet as much as the next parent, and we do encourage him to try new foods as much as possible.  However, there are only a limited number of foods that Ben will eat.  Part of this is because he is bothered by foods with texture.  Part of this is because he likes routine and consistency.  This is why he requests the same cereal every morning when he gets his breakfast at school. God bless the cafeteria ladies who save him back his favorite flavor of juice when they are running low. This is also why I pack him essentially the same lunch every day.  We are working on the food thing as best we can but it is not easy, so yes, we pick our battles.

  3)   I discipline differently than most parents

Early on, I learned the difference between a tantrum and a meltdown.  A tantrum happens when a child decides to throw a fit to get his way.  You can spot a tantrum because a child is watching for your reaction and is in control of the tantrum.  The child can stop a tantrum at any time.  A meltdown occurs when a child becomes overwhelmed by sensory input or emotionally dysregulated.  A meltdown is much more emotionally intense than a tantrum, and once a child reaches a full-fledged meltdown, they are no longer in control.  The meltdown is just as scary or more for the child than it is for those watching it happen.  So, yes, my husband and I have rules and consequences for my son, and we try to be very, very clear about our expectations.  Our son’s behavior is almost never a result to defiance but rather presents itself as an emotional outburst (often tears) as a result of frustration sensory overload, or an unexpected change in routine.  Therefore, while we give consequences, we are very, very gentle with him and try to give him tools to handle his big emotions.  When his emotions ramp up, then I have to make myself very, very calm.  Which leads me to…

  4)   I spend most of my money on squishy balls and play-doh

Now I know that some of you are thinking that your kids like these things too, but for my kid, they are a VERY big deal.  One of the strategies that we have taught Ben for dealing with his emotions is to squeeze a squishy ball.  He has a huge collection of them for this very purpose, and heaven forbid one pops, rips, or breaks.  We have social stories ready for this very purpose (Sometimes our toys break…)

Play-doh is another necessary tool.  It builds his hand strength, which helps him with fine motor tasks like writing.  One of his favorite things to do is open a brand new container of play-doh and inhale its unique smell.  Recently we learned to make play-doh using Kool-Aid and he has been in heaven experimenting with different scent combinations.

  5)   My life feels like one big movie script

Many children on the spectrum who are verbal like Ben engage in something called echoalia.  This means that they parrot back phrases that they hear others say.  Sometimes they may repeat a word or phrase right after the speaker says it, but in Ben’s case it is often stored away in his memory for later.  Often called scripting, Ben can memorize lines from his favorite books and movies and uses them during conversations and playtime.  I know that his teachers think that he has a vivid imagination (which he does), but they probably don’t realize just how often he is channeling one of his scripts.  For example, when he says “We regret to inform you that chapter three was a dream”, I know he’s quoting “Bad Kitty Gets a Bath”, or when he pretends to hack up a hairball in class (sorry Mrs. B), he’s acting out a scene from a chapter in “Bad Kitty School Days”.  Often he will use lines from these scripts in conversations, which he did tonight when he called Daddy back upstairs after bedtime and asked, “What about goodnight kisses?” in a perfect Agnes voice from the movie Despicable Me (Daddy did forget the kiss, and I knew Ben would be calling for it).  Ben has been scripting for a very long time.  In fact, I remember making a “cheat sheet” of Ben’s words and phrase for my parents (who live out of town) one summer when they came to watch him for a few days. 

  6)   We live our life by rituals and routines

Every parent knows the importance of having consistency and routine in their child’s life, but for Ben this predictability is his rock in what can be a very chaotic and confusing world.  I am reminded of this any time I deviate even slightly from our rituals.  Bedtime is a great example.  I’ve never taught him to do this, but I swear my kid can tell time.  If I try to start the routine a few minutes before the regular time, he’ll point to the clock and protest, “It’s too early!”  After teeth, books, and a story of what’s happening tomorrow (our social story which prepares him for the events of the next day) and prayers, I say the same phrase, “Mommy will be on Mommy’s bed.  Ben will be on Ben’s bed.  Have a good night sleep and I’ll see you in the morning.”  There’s almost something sacred about our ritual.  He needs it to feel centered and secure.

  7)   I celebrate the little things and find joy in ordinary moments

Most parents take for granted that their child will walk, talk, wave “bye-bye”, say “I love you,” ride a bike…  For some parents, each of these milestones is a long time coming, if ever.  So I try to never, ever, take for granted the progress that Ben makes.  Like the first time he had a real conversation with another person.  Or the time he started a game of hide-and-seek with some kids at the playground.  Or the moment when he snuggled up to me in the chair and leaned over to kiss me on the cheek .  These moments take my breath away. 

  8)   I let my kid have an iPad

      Yes, I said it.  My kid has had an Ipad since he could barely walk.  I know that some view this as indulgent but I have seen Ben benefit from the programs it offers.  We limit the amount of time he uses it, and lately he hasn’t even asked for it at home in the evenings because he is busy with art projects or checking on his trains. However, I do rely on it when we have to wait for extended periods of time at the doctor’s office or if we take a long car ride to a therapy session.  And, on the days when he has to stay a long time in the after school program, it gives him something to share with the other kids.  The coolness factor certainly doesn’t hurt.

  9) I honor my child’s requests whenever possible

      When Ben communicates to me that something is too much for him, then I listen because I’ve seen what can happen when I fail to heed his warning.  Like the time I kept him in a dark theater when he was petrified of the huge dragon puppet and then wouldn’t go into another dark place for months.  So if Ben doesn’t want to go on a ride at Disney, I listen and honor that request.  This doesn’t mean that he always gets his way.  If his safety is at risk or if there are existing plans that cannot be altered, he does have to learn to deal.  But, if I’m able to give him choices, I always do.  And if his request is a reasonable one that I can honor, I always will, because I want him to know that he can always communicate his needs to me and that they will be heard and respected

  10) I compare my kid to my kid

      Another thing I stopped doing very early is worrying about what my friend’s kid on Facebook is able to do that my kid can’t.  I’ve learned it’s much more productive to measure Ben’s progress against himself.  And while this doesn’t mean that I don’t have goals and expectations for him, I’m not going to stress if he’s not making the most soccer goals or if he doesn’t make captain of the debate team.  If he gets those things, it’s definitely a bonus, but I’m cheering for the progress he’s making, because he always gets there in his own time.

…and, in case you were wondering, here are ….

          
10 Things I Expect of my Autistic Child

  1)   I expect my child to have manners

      This includes everything from saying “please” and “thank you” when he receives an item to waiting for his turn to talk in a conversation.  We’re still working on these things but he is getting there.

  2)   I expect my child to pull his own weight

Ben is responsible for picking up his toys, doing his chores, which include taking in and out the trash and feeding the dogs.  He carries his dishes to the sink and puts his clothes in the hamper.  Ben is my helper at school and often runs errands with me at the end of the day.  Heavy work is a form of occupational therapy and helps with keep him centered.  Plus, it’s great for character building!

  3)   I expect my son to show kindness others…

…and I hope that the world will show kindness to him in return.  Ben is one of the most loving people that I know.

  4)   I expect my son to work hard and do his personal best

      Life can be extremely frustrating for him because it does not cater to his style of learning, but this is not an excuse to give up.  Every day is a lesson in perseverance and problem solving.  When his Legos break or he can’t get the glue bottle to work or the lid off a container, I expect him to find strategies to deal with this, even if it’s as simple as asking for help.  This does not mean that I am going to push him to his frustration point.  This also does not mean that I expect him to act like every other child.  My job is to provide him the supports that he needs to be successful, and then to gradually take these supports away when he is ready, which leads to…

  5)   I expect him to learn independence

I have full confidence that there will come a day when my son will be a successful, contributing member of society. I remind myself on a daily basis that, even though it takes longer, I have to let him learn to do things on his own.  Whether it’s styling his own hair or giving himself a shower, he’s slowly learning the skills it takes to be an independent little man.  And I could not be prouder.