Make The Time

Most of my posts on this blog are all about my son, Ben.

This post is different. 

This post is all about me, and it’s all about you

Let’s face it- as parents we often put our needs last.  And as the parent of a child with special needs, this is most definitely the case. 

I know that I should make time for myself.  My own mother reminds me of this all the time, but I always think, "Easier said than done!” 

During this past year since Ben’s autism diagnosis, making time for myself just seemed plain selfish.  Even if I wanted to do something for me, at the end of the day I would be too exhausted to do anything else except to collapse onto my armchair and watch a bit of mindless TV (if that) before heading to bed.  In fact, sleep became one of the biggest necessities in life, because without it, my ability to function through the day really screeched to a halt.

I love my son Ben with a depth that I didn’t know existed before him.  And, for a time, I thought that the loving him meant allowing his very real and legitimate needs to engulf my entire world.  His schedule took precedence over my own.  I spent a great deal of my time worrying about finding the right school to meet his needs, researching the most innovative therapy and approach to help him succeed, and striving to reinforce his learning at home.  Every moment was a teachable moment not to be missed or squandered, and, if I had a few moments for myself, then the guilt would creep in.  My needs came in at a distant last.

This weekend I had the opportunity to spend a little time with some old friends.  I met one for dinner, and then had lunch on the Saturday with two others.  This time with my friends provided me with a much-needed perspective.  Autism was not the center topic of conversation.  Neither was parenting.  It was a much-needed break.

As we talked, one friend asked me how my past year has been since Ben’s diagnosis, and I told her that, quite honestly, this past year, I lost sight of myself within the magnitude of figuring out this thing called autism, the therapies, the services, and the constant worry about his future. 

As I sipped tea and chatted with my friend, I listened to her talk of her trip to North Carolina, where she did yoga daily and took the time to breathe the fresh mountain air.  This friend of mine had just come off an equally stressful year, though her stress centered around her huge responsibilities at work.  As I listened to her share how she had to let go of some of these responsibilities for her own physical and emotional well-being, I realized that, slowly I was finding my balance too. 

Ben is feeling happy and successful in his inclusion kindergarten class.  He is in great therapies that are helping him to progress.  Life is becoming more…balanced.  Not to say that Ben’s needs have taken a backseat, but they are no longer allowed to overshadow my own. 

Because, in the midst of the stress and turmoil that can come from raising a child with special needs, it’s hard to imagine finding time for a week in the mountains, let alone a day away at the spa.  But, finding time for ourselves doesn’t have to be that fancy or elaborate, though vacations are certainly nice if you can swing them.

For me, I look for the moments that allow me to rest and unwind.  I seek to carve out pockets of time within the day that are for me and me alone.  Moments whose sole purpose is focusing on my physical, mental, social/emotional, and spiritual health and well-being.  Steven Covey refers to it as sharpening the saw.  Covey says that “feeling good doesn’t just happen.  Living a life in balance means taking the necessary time to renew yourself.”

I challenge you to look for moments in the day that are just for you.  Here are some that work for me.

Physical:

I love to take a long soak in a hot bath after Ben has gone to sleep.  I pour in the bath salts, light candles, and just let my body rest.  I try to do this a couple of times a week.

I may not be able to do yoga on the mountains, or even make the class at the local YMCA, but I can do my yoga tape at home and still let my body feel the benefits. 

For some, exercise and walking are their release.  Now that Ben is in kindergarten, he’s able to stay in the after school group, which gives me an hour or two where I can walk, go to the gym, or catch up on whatever I want to do. 

I also try to practice deep breathing throughout the day.  It helps me to stay calm and centered. 

I’m also recommitting to eating right.  Ben is a picky eater, and it’s been very easy this past year to simply grab fast food on the way home from therapy in the evening.  This year, I’m being very intentional about the foods that I am eating, and I’m feeling so much better already.

Mental:

For so long, the only music I listened to was Disney music.  Then one day, as I was working at school with a new colleague, and she asked me about my favorite new music, I realized how out of touch I truly had become.  After that, I started listening to my stations on the radio again.  I pulled out the tracks from my favorite musicals while driving to school and I felt my mood lift. 

Reading is also one of my favorite hobbies, but, for the past year, most of my reading centered around the topics of teaching or autism.  Lately, I’m branching out and revisiting my favorite authors again.   Even after a busy day, I try to make time to read something I really want to read. 

Writing this blog has also been a great mental release for me these past few months.  I love to write, and this blog has given me an outlet and a purpose.

Spiritual:

I have always been a very spiritual person, but my spiritual health has taken a hit this past year.  I’ve been trying to be more intentional about finding the time to pray and to worship. 

For the first few years of his life, Ben had great difficulty attending church because the sensory overload of being inside a building packed with people, bright lights, and lots of activity was just too much for him.  We did not want him to form a negative association with God, so we decided to take a break from church for awhile and study the Bible at home instead.  However, this past summer, Ben had great success attending my parent’s church, so I am excited to give church another try. 

In the meantime, I make quiet time for God, and reconnect with him when I visit the ocean and in the quiet minutes before Ben wakes up from bed.

Social/Emotional:

By nature, I’m a quiet person with a few close and loyal friends.  I don’t need a lot of social interaction to feel fulfilled, but friendship is very important to me.  I try to make time to have lunches with my friends whenever I can.  It’s important to talk, laugh, and reconnect. 

I make time every week to call my family. Since I live half a country away from them, I need that time to hear their voices, as my mom said to me on the phone tonight. 

I also need time with my husband, even if it’s just an evening at home to talk and share a home cooked meal together. 

I’ve also made some friendships with the moms that I have met through Ben’s therapy groups.  Sometimes while the children are in their group, we’ll head to the local Starbucks, have a coffee, and chat.  Making time for these moments helps keep me feel connected and fulfilled.

I used to think that I was the kind of person who didn’t “need” that extra time for me.  That I can get by just fine without it.  As I look back on this past year, I now realize that I was wrong.  Because, truth be told, Ben needs me to be at my best, and the only way that I can be my best is to make time to care for myself first.

Little changes can truly make a big difference. 

Find those pockets in the day that are just for you.  It’s vital that you do.

Teach Your Children Well

In this photo, Ben is painting with his friend at her birthday party.  They are two artists sharing a set of paint.  

Friends, I need your help.

I know that some of you have children, and some of you do not.

Some of you I know in the real world, and some of you in the virtual world only.

Right now, I need help from all of you.

I’m not one to make requests, but I need to talk to you about something that has been going on within the autism community.  I realize that you may not be aware of what has been happening in the media lately.  I’m the kind of person who usually avoids watching the news because I hate seeing all of the negativity in this world, but some recent events have captured my attention.

Bullying has always been an issue between children, and it has always been a concern to me as a teacher and as a parent.  But, more and more often, the victims of these malicious attacks are autistic.

In Bay Village Ohio, an autistic teen was the victim of a cruel ice bucket challenge prank.  A group of teens dumped a bucket containing feces and bodily fluids on an autistic young man, telling him that it was part of the fundraiser and captured it all on video, which was then plastered all over social media. 

In another event that happened closer to my home in South Florida, police responded to a 911 call.  When they arrived at the scene, they found a young man lying in the middle of a road.  This autistic teen had been lured to a party by his so-called friends, only to be beaten senseless and then forced to walk to a spot on a road where he then collapsed.  The video of their brutal attacks has also gone viral on Facebook and all over the Internet. 

Friends, my son is getting older and this year he started kindergarten.  I feel deep empathy for these victims and their families, and I cannot help but think that in six years time, my son will be in middle school.  Many of you have children who are about the same age as mine, and these are issues that all of our children will be facing very, very soon.  Others of you have children who are already confronting these very issues right now, so for you, the matter is even more urgent.

Because, as Diary of a Mom says here in her post called Selfish Diplomacy, it’s not that I want to change society.  I need to change it.  I need to change it for my son, because there will come a time when I will no longer be around to protect him.  In six years, he will be entering the walls of middle school.  One day, he will become an adult. 

For, you see, autistic people, especially kids and teens, are easy targets.  They are often unable to read the social cues of those around them.  They have difficulty sensing sarcasm, underhanded comments, and discerning between genuine and false friendships.  This makes middle school and high school, already such difficult places to navigate for the typical teen, the stuff of nightmares.

My son has such trust in others. 

There are times when his excitement and joy cause him to literally leap into the air.  He walks into the middle of conversations and begins talking to anyone in proximity about whatever is on his mind.  He doesn’t understand the social order of things.  Just last Friday, as we came into the cafeteria where the before school care meets, my kid ran right up to the fifth grade table and announced, “Guess what?  Today’s the teddy bear picnic!  Look at my bear!”  Right now, he’s young, and new to school, so his social differences are viewed as cute or shrugged off.  As he gets older, I know that kids will be less and less understanding and tolerant, unless they are taught to understand and respect these differences.  And, while we will continue to work with Ben on his social skills, I have a good feeling that his unique and larger than life personality will continue to attract attention as he moves up in school.  My mothering instinct worries that this will make him a target.

Because, as much as our society likes to say that it celebrates differences, the reality is that different is still something to tamp down and hide, and, at worst, ridicule and mock.

So, this is where I need your help.

If you have children, I need you to talk to them. 

Teach them to accept others who are different, but don’t stop there.

Teach them that kids with special needs are still regular kids like them, and not something to shy away from or fear.  Truly, we are more alike than different.

It is human nature to fear what we do not understand.  The problem is that fear breeds intolerance, hatred, and, ultimately, acts of cruelty.

I know that you cannot solve all of the world’s problems, but you can help your children to practice kindness, and kindness is the first step.  You can teach your children to listen to that inner voice that tells them when something is right or wrong, and to speak up when they see others behaving badly. 

We all want to believe that our schools are safe places.  We want to believe that the teachers are taking care of these things at school.  As a teacher myself, I know that my fellow educators are doing their very best to make school a safe learning environment, but teachers cannot be the only people who teach our children these lessons about tolerance and respect.  Schools have more and more academic expectations placed on them every year, which squeezes out the time needed to talk to kids about the hidden curriculum- the curriculum that teaches children how to be a good person in this world.  The curriculum that, at the end of the day, truly matters the most.  Please, don’t trust that the schools will take care of these conversations for you.  None of us want to believe that our child could be the child who instigates these heinous acts.  But, for every bully out there, there were countless more witnessing it happening and then sharing it on social media. 

Teach your children how to be advocates, not just for themselves, but also for the victims who may not even be aware of the wrong that is occurring.  I know that it is so hard to stand up against peers, but I know you have strong children, my friends. I know that as your children grow up, they will help stand up for my son and those like him when the time comes.

And, as one last request, I ask you to serve as an example to your children and to others.  There was a time when I might have laughed when someone made a joke at the expense of a person whose behavior was a little….different.  Let me tell you, when your child gets diagnosed with a disability, those jokes suddenly are no longer funny.  Our society is quick to push aside those who are weak and who do not conform.  Show your children where your values truly lie by modeling those behaviors of acceptance.

This summer while I was in Indiana I attended my parents’ church.  As I stood and sang with the congregation, I noticed an adult woman with Down’s Syndrome worshipping in the front row, her arms swaying to the music.  She was clearly attending church on her own, but I could tell that she did not mind being by herself.  She clearly seemed to be enjoying her worship experience.  Before my son’s autism diagnosis, I might have barely taken note of her, but as I watched her from a few rows behind, I thought about all of the people who must have come into her life over the years to help her to develop into the confident and independent adult that she was on that day.  My heart swelled with hope for the future that is also possible for my son.  And then, after the service, I watched as my father stopped to converse with her, and I was pleasantly surprised to realize that they were friends.  Parents can be powerful examples to their children. 

I know that you are already teaching your children these lessons of kindness and respect.  I see examples of it every day.  Recently, my son was invited to a birthday party by one of the little girls in his class. I was apprehensive about him going, but it turned out that he had an amazing time. It was a painting party, and the birthday girl wanted Ben to sit next to her.  I realized that Ben would be sharing a paint set with the birthday girl, and I watched the events unfold with apprehension.  My son, who is the type of artist that values messy exploration and color mixing, was sharing with a child who obviously valued a neat, pristine product.   However, she never once complained when her pink paint became sloshed with grays and greens.  She marveled with delight at Ben’s creation, a “pirate jungle mask” and never once questioned his artistic approach.  Then, a few days later, I saw this post on her Mom's Facebook page. The mom had posted an article on her Facebook wall about understanding disabilities. Above the link, the mom wrote this comment: "I hope that my children will grow up seeing all of the abilities in people, not their "disabilities".  Loving them for them and not caring what the others say, but continuing to believe in what they know is true and speak up when needed."

Tonight, as Ben was brushing his teeth, he told me that the little girl is his friend.  When I asked him why she was his friend, he answered, “Because…she is super kind.”

There is evil in this world, but there is kindness too.

We are stronger than we realize, if we stand together in this.

I am counting on you, my friends, to stand with me. 

To stand for Ben, and for countless other kids like him, whose differences can be gifts if we let them be.

I need you, my friends, because I cannot do this alone.

Editor's Note:
An update to the ice bucket challenge story.  One brave young man did stand up and call out those who initiated that hideous prank.  Read the story on fellow blogger Full Spectrum Momma's page here. 

My Favorite Time of the Day #SensoryHop

Ben snuggling close with his blanket, stuffed animal named Stinky, and his squishy ball.   Sometimes he gets so cozy that he falls asleep.

Myth:  Autistic people cannot show affection.

So often, autism is portrayed in the media as individuals who are cold and unresponsive.  Many people think of autism as children and adults who recoil from touch and pull away from people, even those who love them the most.    

The truth is this. 

We all have different sensitivities towards touch, whether we have autism or not.

Many of us are bothered by light touch.  Light touch is often alerting. It gets our attention and can make our skin crawl.  Think of how it feels when a spider web touches your arm when you are walking through the woods.  Chances are you can still feel the tingling sensation long after it’s been brushed away.  You might even be feeling it as you think about the memory now.

Most of us respond well to deep pressure.  Deep pressure is calming and organizing.  There is a lot of research on the benefits of deep pressure.  Many children wear weighted or compression vests at school, and it helps them to stay more calm, alert, and focused on the task at hand.  Deep pressure can have a calming effect and is often used by occupational therapists during sensory integration therapy. Some autistic adults have reported that they like deep, tights hugs only.

It is true that there are some people who cannot handle touch.  They are often called sensory avoiders.  Temple Grandin, a famous scientist and autistic writer, invented a “hug machine” for herself based on a squeezing apparatus used to keep cattle calm.  The hug machine works for her since she has difficulty with human touch.

And then there are those who cannot handle touch of any kind at all.

There are a few, known as sensory defensive, who literally feel at battle with the sensory world. 

That’s not my child. 

My child is a sensory seeker. 

It would break my heart if Ben didn’t let me hug him and hold him close.  I really don’t know how the moms of sensory avoiders do it.  It must be so much harder to communicate love to your child without the language of touch.

Since my son has always been physically affectionate, it was easy for me to dismiss the idea that he had autism for the first few years of his life.

At first, I didn’t recognize that his love of cuddling and touch was, in fact, a real sensory need that had to be met in order to keep him calm and regulated.

Ben loves holding hands, almost to a fault.  Even though he’s now in elementary school, he’s still not embarrassed by holding hands with his mom.  He hasn’t yet reached that stage where he refuses my hand because he wants to be independent.  Instead, hand-holding is his anchor, especially out in the bustling, chaotic world.  If things start to get too overwhelming, he’ll yelp, “Hold my hand!” and, even if I’m juggling several boxes and bags, I’ll strive to comply.

I use the power of touch to help stabilize Ben

throughout the day.

When he becomes upset, a deep hug can often calm him down. 

When he gets over-excited, I instinctively provide a steady hand on his shoulders. 

Ben has responded to my touch ever since he was a tiny baby.  We developed a close bond during those long, sleepless nights of swaddling, rocking, and cuddling close.

And now, five years later, he has started kindergarten.

I am so proud of the strong, independent boy he is becoming.

My days are long, and so are his.  There are some days when I drop him off at school and I don’t see him again until after dinner.

On those days, especially the ones when we only have a precious few minutes together in the evening before it’s time for books and bed, we have our nightly ritual.

As soon as Ben sees me getting comfortable in my leather recliner, he will announce, “Snuggle time!”

In a flash, he squeezes his body next to mine as we angle the chair backwards.  Even in August, we burrow under our fuzzy blanket, turn the lights low, and I wrap my arms around him and squeeze tightly.  He grabs his favorite stuffed animal, affectionately nicknamed Stinky.  He loves Stinky’s smell and holds the furry paw close to his nose with one hand.  At the same time, he slips his two index fingers in his mouth, something he’s done since he was a baby.  During the day, we are working to break him of this habit of finger sucking, but, during snuggle time, I don’t hassle him about it.

During the day, he has to work hard in kindergarten.  This year, for the first time, he’s had to leave his Stinky at home while he has gone off to school.  But during snuggle time, Stinky has his place of honor next to us as we nuzzle close. 

I don’t criticize Ben because he’s not acting his age. 

I simply enjoy our special time together.

Because, let’s be honest, I need snuggle time at the end of the day as much as he does.

While we cuddle close, and I squeeze him tight, we often relax while he watches a Disney movie and I work on my laptop.  Sometimes we’ll play computer games together, or sometimes we’ll read a book.  And then there are nights like tonight when I put my laptop away, turn off the television, and we sit and enjoy the close company of one another. 

It is often during those special quiet times when his words start to flow.

Tonight as we snuggle, Ben seeks comfort in his number patterns, as he recites them for memory.   Mathematical equations are soothing to him.  The answer is the same every time, and he knows this script by heart.

“2 and 2 make 4.”

“4 and 4 make 8.”

“8 and 8 make 16…”

And then begin the questions that always come.

“What does 16 and 16 make?” he asks.

 “32,” I respond.

“What does 32 and 32 make?”

 “64,” I reply without thinking.

And on we go…

Somewhere in the midst of our back and forth, I realize that I used to enjoy this same number pattern when I was a child.  I suddenly flash back to elementary school, when I would run the numbers through my head over and over, doubling them higher and higher in my brain.  This memory takes me by surprise, because I never think of myself as a math person.  Words have always come easier to me.

And, as I turn this memory over in my mind, Ben fills the quiet room with the three words I cherish most of all.

“I love you,” he says.

Unprompted, unscripted…

It has only been a year since the first time he said those words. 

“I love you”

You never, ever, get tired of hearing those words.

And I realize, as we cuddle close, that it’s during snuggle time when I hear those words the most.


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