Why I'm Not Worried About My Autistic Kid's Latest Passion

 

“If a child with autism has voluminous knowledge about a single subject, why is that an ‘obsessive interest’ rather than ‘expertise’?”  -Ellen Notbohm 

Today our family attended a rare coin show for the first time ever.  It was a chance encounter.  We decided to take Ben to a coin store and the dealer mentioned that we should check the event out.  It was only a few miles down the road, and so we did.  Ben has been collecting coins religiously for the past few months.  Not just any coins- state quarters.  The passion started this summer while we were in Indiana visiting family.  We took a road trip to Ohio, and the moment we crossed over the state line and Ben saw the huge “Welcome to Ohio” sign, his new passion was born.  It suddenly clicked in his mind that our country is made up of states, and these states are connected through their borders.  He was hungry to learn more.  And so, he has joyfully delved into learning everything there is to know about the states.  This love has extended to out of state license plates, US landmarks (think Mount Rushmore and the St. Louis arch), with his pride and joy being his state quarter collection.

            
Some might say that Ben is obsessed with the United States.  Autism experts often point to “rigid obsessions” as one of the hallmarks of the spectrum.  Some believe that an autistic obsession is harmful and should be stopped so that the person can move on to other, more “socially-appropriate” or “age-appropriate” subjects.  I tend to disagree. 

And here are some reasons why I think that becoming an expert on a subject is a cause for celebration rather than concern.

1)   It opens doors to learning

I’m a teacher, and over the years I’ve read lots of school mission statements.  Usually a school’s mission talks about inspiring kids to have a “passion for learning.”  It’s no secret that when kids are motivated to learn, their engagement increases, as does their achievement.  In Ben’s case, his love of learning about the United States has launched us into a joyful study of US geography.  I would wager that he now knows more about US geography than most adults.  He can build a US puzzle in under a minute.  He spends hours on Google Earth navigating and studying landmarks.  One day he discovered Washington DC on Google Earth, which led to conversations about our United States presidents.  He is convinced that we need to take a trip to DC when he becomes a second grader (and how can I argue with that logic?).  His explorations of Google Earth has led to discussions about other countries in the world, oceans, deserts, islands, cardinal directions, travel time between states, and so much more.  His love of state quarters has spurred many talks about money, currency, and the value of common versus rare coins.  We have watched videos on how currency is made and he has contemplated future careers for himself.  We have talked about vocabulary terms such as mint condition, borders, and currency.  All terms I would not normally discuss with a six year old, but they naturally progress in our everyday conversations through his questions and his zeal to learn more.

2)   It connects him with the community

It’s not every day that you see a six year old with a passion for coin collecting.  It’s fun to watch the reactions of grown-ups in public.  On one particularly memorable trip to Subway, Ben received the change from the teenage girl and he jumped into the air with glee.  “A MISSOURI quarter.  Thank you SO much!!”  The girl could not stop smiling.

The deal we’ve struck with Ben is that when we use cash in a store or a restaurant, he gets to keep our state quarters.  Of course, now he wants us to pay with cash everywhere we go.    He handles all of the money transactions for the family.  He’s getting good at asking politely if the cashier has any state quarters in their tills.  They are always happy to look for him, and he’s learning to handle the disappointment when they don’t have it.  He takes it in stride.

Finding a state quarter on a trip to the store is fun, but it was nothing compared to the joy he felt today when he entered the coin convention and spotted rows and rows of rare, gleaming coins.  His eyes lit up like a kid at Christmas.  As I looked around the crowded convention hall, it was clear that he was the only kid in the building.  As he approached each table, studying the cases carefully, the vendors would look up in surprise, especially as he started naming the coins he recognized from the Internet.  Many would over and talk to him and were amazed that he could carry on a conversation about their coins.  They were clearly pleased to see a young person taking such an interest in their collection.  Many passed on tips and advice.  Some would even take coins out of the case and let him hold them.  One asked when his birthday was and dug until he found a coin from his birth year, giving it to him at no charge.  He would not accept our money, instead making Ben “pay” by promising to “do what Mom and Dad say”.  My heart warmed as I watched my little boy become accepted into a community as their apprentice.  He left with his pockets jingling and a huge smile on his face.

                                                                                                

3)  It makes him happy

This is perhaps the most important reason of all.  How many of us still find the time for the things in life that bring us true happiness?  When Ben finds a new quarter, his whole face lights up.  He may not be interested in Teenage Mutant Ninja Turtles or Avengers or other things that six-year-old boys typically enjoy, but his interests are no less valid.  And, by cultivating his interests rather than pushing him towards something that is more “socially typical”, we are allowing him to express his true self, and, by extension, teaching him to be happy in his own skin. 

I have no desire to change my son.  If anything, I want to be more like him when I grow up. 

How He Learns

        

Ben is practicing his writing using the stop light letter technique invented by his OT.  

            This year Ben has started first grade at yet another new school.  This is the third new school he’s attended in as many years.  I know how important stability is for a child, and I never imagined I would have moved him as many times as we have already.  However, it was more important to find a school that has the flexibility to teach in a way that Ben learns best.  We are thrilled to report that it looks like we have finally found that place.  This meant a move to a private school, which wasn't an easy choice since I'm a public school teacher.  You can read more about the reasons behind our decisions here.

            From the first week of school it was clear that Ben felt comfortable at his new school.  On Friday of the first week of school, he told me that I had found a school that is a perfect match for him.  After the second week of school he told me that he wants to stay at his new school forever. 

            These comments comfort and reassure me, but I still find that I can’t completely relax.  Ben’s new school is not without its challenges. The indoor gym at the school makes the children’s voices “loud and echoey” and Ben must wear noise cancelling headsets to tolerate the amplified sounds.  “I hate when the boys and girls scream,” he tells me.  His after school teacher came up with a plan that allowed him to play just outside the gym in the lobby with a friend or two, and that has helped enormously. 

            Situations like these that make me realize that he has grown old enough for the talk.   There is much debate in the special needs community about the proper time to let your child know about his or her disability.  Some argue against telling the child at all, while others tell their child from the moment of his or her diagnosis.  I have read articles written by special needs adults who were not told about their disability until they were much older (or- worse yet- they discovered it on their own by coming across the paperwork), and they describe the resentment that they feel because they knew that they were different but didn’t know why.  They believed that there was something wrong with themselves because of these differences. 

            I never want Ben to have to feel that something is wrong with him just because he has different needs.  I want Ben to understand how his unique brain works and both the strengths and challenges that it brings him.   I want to talk about it in a kid-friendly way.  I’m not ready to put a label on these differences yet and call it autism or sensory processing disorder.  I will use these terms when the time is right, but for now I plan to have the conversation in a way that makes sense to him.  It will no doubt become multiple conversations that unfold over time.  I have patiently waited until the time when he was ready.

            I found the perfect moment one Saturday morning when he and I were out running errands.  I decided to stop off at our neighborhood Starbucks.  I bought him his favorite special drink- a vanilla bean Frappuccino (a caffeine-free treat) and we headed outside to sit at an umbrella table and watch the cars drive by. 

            After we settled into our spots, a long comfortable silence filled the space between us.  I learned long ago to respect the silence.  I could tell that it wasn’t just any silence.  Inside my son’s head, his thoughts were swirling and he was searching for just the right words to shape his deep thoughts.

             “I don’t go to my old schools anymore,” he mused, beginning the conversation in the middle as he so often does.  Or, more accurately, picking up on a conversation that we had begun days before.  “Those schools were not a match for me.”

            I paused, considering his words, and deciding that this was the moment I had been waiting for.  “And your new school is a match for you?”

            “Uh-huh,” he agreed.

            “Do you want to know why it feels like a match?” I asked.

            Ben met my gaze with a piercing stare of fierce concentration.  He nodded.

            I proceeded to explain how our brains are like machines.  Every person’s brain is different.  Each of us has things that we are good at and things that are hard for us.  I told Ben that his brain is excellent at remembering numbers and facts like his states and capitals.  However, his brain can sometimes get stuck and stop working well, such as when a room gets too busy or filled with noise.  It’s also hard for his brain to work when someone is telling him things to quickly.  This can make his brain shut down.

            “It’s like a traffic jam in my mind,” he agreed.  “I don’t like traffic jams.”

            I told him that his brain remembers things better when he sees pictures of what he is learning or when he can try things out with his hands.  However, his brain forgets easily if he only hears words.

           “I love stations,” he piped up.  “They help me learn.  My new school has lots of stations.   And I love science too.  Especially the experiments.”

            We talked about how every brain is different.  One is not better than the other.  We also talked about how every school is different, and some schools that may be a match for some boys and girls may not be the best match for him.  Ben has many friends who still attend these schools, and I wanted him to understand that there was nothing wrong with these places.  Lots of great learning is happening there, but his new school teaches in a way that his brain learns best.  Ben nodded.  He understood. 

            We talked for awhile longer about his sensory needs.  We talked about how things seem louder to him than they might seem to others.  We talked about how he is bothered more easily by noises and what to do when things become too much for him. 

             Ben and I talked like this for ten magical minutes.  It was the longest conversation that he and I have ever had.  As I think back on it now, I’m amazed at how easily the conversation flowed.  I didn’t have to steer the talk, nor did I have to probe him for information, which often causes him to shut down and turn off the conversation immediately.   In the past Ben hasn’t wanted to talk about school but on that sunny Saturday morning he shared details about his class with me that gave me a glimpse into his academic world.
             I am grateful that we have found a school that is so suited to his needs.  I wish every child could find such a place to learn and grow.  Ben is fortunate to be surrounded with so much love.  He has left his imprint on the hearts of those who have worked with him, and we appreciate each and every person who has helped him grow into the amazing boy who is is today.  

            I know that I cannot predict what the future will hold.  I know that I cannot make myself stop worrying completely, but what I can do is to teach Ben to know himself well enough to be his own advocate.  The more he can articulate his needs in a respectful way to the adults in his life, the more chances he will have for success.  And I know he is well on his way.

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

V is for Vegetables- Vegetable Painting Fun

Let's face it.  Vegetables are often among a child's least favorite foods, especially if that child is a sensory picky eater.

My son is certainly no exception to this rule.  The only vegetable that he will eat with any kind of regularity is the carrot, and even then only in small amounts.

One thing that my son does love to do is to paint, so I decided to combine his love of painting with some sensory exploration of those dreaded vegetables.  Not only was he excited to take the project on, but he came up with his own creative approach to the experiment.

Step 1:  Gather the Vegetables

I had plenty of veggie options already on hand in the refrigerator.  Many were close to their expiration date since the little man wouldn't touch them, so they were perfect candidates for the project.  We chose to use celery, corn, potatoes, green beans, carrots, and mushrooms for our painting, but any vegetables will do.

Step 2:  Gather the art supplies

You will need paint (washable is best), art paper (or any paper you have on hand), and a covered work space.  Make sure to dress your little one in old clothes as it can get messy!

Step 3:  Create your stamps

My original intent was to have my little man use the vegetables as stamps on the paper.  I carefully used a knife to cut the potato into different stamp shapes, and I cut a flat surface on the carrots and green beans.  Ben, however, wanted to paint the actual vegetables and create a veggie art show, and so we decided to do both.

Step 4:  Use your imagination and have fun!

Veggie art is a great sensory experience!  Ben had fun smelling each vegetable prior to painting it.  He loved the sensation of pushing the vegetable into the paper and exploring the various textures of each type of veggie.  He even tried eating a bite of an unpainted mushroom at the end of the experiment, so I count that as progress!

Here are some of the veggie masterpieces that we made...

Celery Painting

Corn Painting

Green Beans, Carrots, and Mushrooms...oh my!

Potato Stamping

Read more about Ben's adventures and antics on his page Changed for Good Autism

The post is the Letter M of the Alphabet Sensory Activities hosted by The Jenny Evolution and The Sensory Spectrum!  26 amazing bloggers have gotten together to share a sensory experience based on the letter of the alphabet.  Be sure to check out all the other amazing activities that start with the other letters of the alphabet!

No Man’s Land

This post has been hard for me to write.  I’ve rewritten it over and over this weekend.  There’s so much I want to tell you, but it’s so difficult to put into words.  Lately my heart has been overflowing with gratitude for the opportunities that God has presented for my little boy.  He has found a school where he is learning and thriving.  He has family and friends who love him dearly, and he got to spend precious time with loved ones this summer.  He is content and happy.

I read through Ben’s binder this weekend.  Every special needs parent has the binder.  It is filled with meeting notes, assessment data, IEPs, and procedural safeguards upon procedural safeguards.  I dug out the binder because tomorrow Ben’s team will sit down and write his service plan.  This plan will replace his IEP for as long as he is enrolled in private school.   As I sifted through the psychological reports and read over the evaluator’s notes, I thought about the little boy who spoke in one-word sentences, who did not reciprocate affection, and who did not play with his peers.  I thought about how far he has come during these past few years.  And yet, while we have left some challenges behind us, there is still so much work to do.

My son has a hidden disability.  It doesn’t come with obvious markers, like a wheelchair or a cane.  And yet, his differences are there and impact the way he interacts with his world.

Ben has sensory processing disorder or SPD.   This means that the information from the outside world doesn’t get filtered in the usual way by his brain.  Instead, the information from outside comes rushing in- or it comes at him in a jumbled way, much like a muffled radio signal.  This becomes most pronounced when his environment is unpredictable or when he doesn’t have the opportunity to decompress and recharge.  His sensory processing disorder is more disabling for him than his speech and language delays.  It is more disabling even than his autism.  And yet, some days it is not disabling for him at all.

I have some friends who only know my son from his smiling Facebook photos and my status updates that describe his antics.  Sometimes they’ll ask me about how my son is doing.  Often, they have read my blog and want to understand more about sensory processing or autism, because they are teachers themselves.  I’ll often get asked, “I know he has sensory challenges and autism, but it’s not that severe, right?”  The answer to the question is complex.  On the surface, Ben looks and typically acts just like any “regular” kid.  In the right environment with proper supports, he does not “stand out” that much from other children.  If you were to look over at our table at Olive Garden, you’d see a kid happily engrossed in coloring or playing on his ipad.  When we go out these days to the supermarket or even to the theater, we rarely attract attention.  But, if Ben gets put in an unstable environment and we don’t pay attention to his cues, it all can escalate quickly.

           

There are days when Ben doesn’t require any additional supports at home or at school, and then there are days when he needs all of them.

Ben is a talkative, imaginative little boy, and so it is easy for others to forget, or not even realize, the sensory challenges that are always lurking in the background.  I am forever reading his face, just as a meteorologist searches the sky for signs of an oncoming storm.

And so we live in no man’s land.

           

We walk the thin invisible line between the general population and the world of special needs.

Example 1:  Ben’s new school has an indoor gym.  These are rare in Florida, because kids can have PE outside all year round using open-air pavilions or grassy fields.  Ben loves the new gym but is bothered by the “loud, echoey noises”.  When he told me this, my first reaction was to get him noise cancelling headphones.  His teacher was on board with the plan.  My husband, however, pointed out that the headphones could make him a potential target for teasing at this critical time when he is trying to establish friends at his new school.  I see my husband’s point but I also don’t want my son to have to “tough out” the sounds in the gym. 

Example 2:  This weekend Ben will start playing baseball.  We decided to let him play on the Miracle League, an adaptive baseball league for children with disabilities.  It is a wonderful organization.  Every player is assigned a buddy to assist them on the field.  The field itself has been adapted to accommodate wheelchairs and walkers.  Every player gets to hit ball and fully experience the game.  I am so grateful that such a league exists and so excited for my son to have the chance to play, but secretly I feel guilty.  I know that there are many different forms of disabilities, but I worry that because my sons is a hidden one, others may question his spot on the team.  What will the parents of the child in the wheelchair think when they see my able-bodied son running the bases when theirs must wheel around with assistance?  I know my worries are unfounded, but they creep into my mind anyway.

And so we walk the thin tightrope- struggling to balance ourselves between these two worlds.  I don’t want to "borrow from tomorrow’s sunshine" with my worries, but I can’t help but look towards the future and try to anticipate the next hurdles, even while I give thanks and celebrate the successes and the accomplishments along the way.

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

Why We’re Choosing Private School for our Son

            For those of you who know me in the real world or who’ve been following this blog for awhile, you know that I am a public school educator.  I have been working in the school system- specifically in low-income schools- for the past thirteen years.  I am a big believer in public schools and have a deep sense of pride in the work that we do.

            But my husband and I have decided that public school is no longer the right choice for our son, who will be starting first grade this year.  We didn’t come to this decision lightly nor by ourselves.  We consulted with his team of teachers and support personnel, researched many different options, visited different sites, talked to family, prayed about it, and finally reached our decision.  Suffice it to say that it was not an easy choice to make.  However, in the end, everyone in Ben’s life agreed that the school we chose looks to be the best possible match for him.

            I’m writing to you about this decision not to encourage everyone to leave public schools and pursue private.  I’m writing to say that this decision is as individual as each precious child.  This decision makes sense for our family for these reasons…and many more…

1)   The pace is slower

Public school teachers are bound to standards and pacing guides that clearly lay out the information that needs to be taught in a specific amount of time.   Teachers often feel a push to get it all in.  I see it every day. Private schools have the flexibility to design their own curriculum.  Ben’s school has chosen a curriculum that focuses on teaching through hands-on, multi-sensory learning, and the majority of learning happens in small groups.  Ben is a smart, capable boy, but he had a hard time keeping up with the pace of the curriculum in kindergarten, which led to higher anxiety for him.  His teacher and I both agreed that this would only get harder as he progressed through the grade levels.  We made the decision to make the move now before the struggles became too much.

2)   Less emphasis on testing

Let me say that I am all for assessments and accountability.  I believe that we need to assess children to know their strengths and weaknesses, and to use that information to guide instruction.  However, it had become clear from both Ben’s PreK and Kindergarten year that Ben does not perform well on tests.  He has difficulty focusing, even when he takes the test in a very small group.  Therefore, the results of the test are usually not an accurate picture of his abilities.  Public school uses testing as a measure of so many things and spends so much time in preparation of testing.  His new school will spend much less time on assessments. 

3)   Little to no homework

Again- I am not against homework on principle, but I believe that homework should be a way for the child to practice skills that are taught in class.  I don’t believe it should consume all of the evening hours.  Ben will read with me every night and do a reading log, along with some math games to reinforce what he is learning in math.  That will be it.

4)   Smaller class size

Ben is a child who requires extra assistance, and this is very hard for public school teacher to give (though they certainly do their best!).  Had he remained in public schools, in order to receive a smaller class size with more assistance, he would have had to go to a self-contained classroom that had all students with disabilities.  Ben’s new school has a class of sixteen with one teacher and one full-time teacher assistant who is always in the room.  This will provide him with more adult support while still staying in a class with a mix of children with IEPs and “regular” peer models for him, which he needs.  In addition, it is a multi-age class with both kindergarten and first graders in the room.  I am thrilled about this because it will allow him to revisit some of the foundational pieces of kindergarten that he still needs without him having to repeat kindergarten.  He’ll also have the opportunity to visit other teachers in the school for science, writing, social studies, and Christian virtues in the afternoon as each teacher has one subject in which she is the content area expert.  They also have a social skills curriculum called Super Flex to teach flexible thinking using superheroes.  Such a smart plan!

5)   Time for the “extras”

Sadly, because of the curriculum demands, there is little time for the “extras” in public schools.  Also, because it is a public school, there are certain things, such as religion, that cannot be taught.  Ben’s school is actually one section of a large church (which is one of his favorite parts about it).  It has a huge gymnasium (rare in Florida, by the way) where they often blow up bounce houses and has a rock climbing wall.  Ben will have two recesses, one indoor and one outdoor.  Lunch is thirty minutes and the kids eat with their teachers in the classroom (there’s no cafeteria).  In addition, they have PE twice a week, two days of drama, and one day of Spanish.  All children receive support from the speech and OT teachers who come to the class twice a week.  Friday is more relaxed with learning games in the morning to reinforce concepts learned in the week (remember “Fun Friday?”).  In addition, the class is equipped for children with sensory needs.  It has a trampoline, a chill-out tent for when things get to be too much.  They do brain gym every day to help the body and brain connect.  The kids can sit on wiggle cushions or T stools (a special chair with one leg for kids who need to move while sitting).  Oh, and they take a field trip about once each month.  I could go on and on about all the “extras” that are really what will make the difference in Ben’s learning this year.

And so as Ben gets ready to enter his new school, he is sad to be leaving his old friends and teachers behind but excited for his new adventure.  After Open House, he told me that I had found the perfect school for him.  That he matches his school like puzzle pieces fit together.  I hope he is right.  We did our best.  I told him that there will always be challenges that come up.  “But now I’ll know what to do when I am frustrated.  I have a tent,” he told me.  And so, I am cautiously optimistic at the start of this new school year.  We’ll miss his friends and teachers at his old school and we are grateful for all they have given him.  They set him on the right path and we appreciate everyone’s support as we begin this journey into the private school world.  I’ll keep you posted as we continue on this journey.