I Dream of Your Voice: A Poem

I wrote a poem.

Poetry has always been equal parts intimidating and confusing to me.  But, this year has been a season of new things for me so when I started to play around with some words the last couple of days, it just happened. What started with a few whispers and what-ifs in my head, somehow evolved into a poem.

So, here I am, sharing it with you (despite my nerves). I think you'll figure out what it's about on your own.  I'll just add that this is probably one of the aspects of parenting a child with autism, especially with very limited language, that I struggle with the most.

I'm just a baby poet (if I'm even allowed to claim the title) so don't judge me too harshly. I hope you find something about it that touches you.

I Dream of Your Voice

By Sharon M. Peterson

I dream of your voice

soft, slurring syllables of a whisper,

harsh, staccato rhythms of anger,

smooth, rounded vowels of amusement.

The language you speak is foreign

and you are stingy with the lessons,

parsing out tiny bits of knowledge,

only to change the meaning.

I wonder at the words you’ve never said,

thoughts tumbling around unspoken,

questions left unasked, unanswered,

fears and hurts never voiced.

I ache to hear the words “I love you,”

without pretense or thought,

for them to slip off your tongue effortlessly

and be hidden indelibly in my heart.

Instead, I hear you with my eyes, guessing.

You speak without words. A look, a touch,

your movements, your stillness tell a story.

In your silence, you are speaking.

Am I listening?

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A Moment of Light: A lesson from my son with autism (VIDEO)

I was looking through some old videos of our children today (because, you know, I needed to get a good cry.  They were so little and cute!). I stumbled across this video I'd almost forgotten about and wanted to share it with you.  It was a moment I think many people will remember if they were there that day in church with us. But it's also a moment I needed to revisit.

This video is from four years ago when Daniel was six.  We were still dealing with lots of behavior issues related to his autism.  Sometimes, it felt like we were never making progress and it was discouraging.  The smallest thing seemed to be a challenge and it was exhausting to work on the same behavior or skill over and over again.  As an autism mom, some seasons are like this.  It feels like your child is standing still while every other child around you is moving at lightning speed.  In these seasons, for me, it's difficult to see our boys around other typically developing children. The differences are so obvious, so glaring.  It made church a difficult place to be for me.

And then there are times like this.  A moment of light when you're in a dark place. Acknowledgement that your child is there and growing and learning and making progress.  That progress might be tortoise-slow but slow and steady still means moving forward. One of these moments happened on a regular old Sunday in church for us.

For a few months, we'd been working on Daniel sitting in church with us for the first 20 minutes.  Sitting in church is not an easy task for any kid, let alone one with autism.  There's the sitting.  There's the quiet.  There's the being still.  To say this skill was a work in progress (is still a work in progress) is putting it mildly.  But sat with us, he did.

Almost every Sunday, our church recited The Apostles' Creed as a church body.  (If you aren't familiar with the Creed, you can read it about it  HERE). The words were printed in our church bulletins and on the screen in front of us. This particular Sunday, we sat in the middle of the sanctuary and, as the entire congregation began to recite The Apostles' Creed, little six year old Daniel did something pretty amazing.

Out of nowhere, he recited the entire Creed with the congregation.  His voice was pitched just enough that you could hear it throughout the entire sanctuary, from the pastor at the pulpit to the family in the back row. He wasn't scripting.  He was saying it with us. Together. We hadn't been practicing this; we did not even expect that he was paying attention each week.  And yet . . .  he nailed it, word for word.  Heads turned towards us, people smiled.  There was something very special about this moment and everyone knew it.

For me, the reasons were twofold.  First, sometimes when we hear the word "autism," we immediately assume a person is "checked out" and that they aren't listening or paying attention.  We might think they can't understand us and they don't care to be apart of anything we do.  Stop thinking that.  Daniel and his brother are always paying attention.  Always, you guys.  They hear every single word being said.  Whether those words register then or later, they have been spoken and filed away.
Remember this if you're talking about them like they aren't in the room because they are soaking up every word you say.

Always assume competence.  Always assume your words are heard and understood.  You always have the power to affect lives of all people, not just people with autism, with your words.  Make them positive words.

Secondly, on a deeply personal level, how could I not thank God for this moment?  How could I not acknowledge that His hand was on this child and that these words were placed in Daniel's heart?  I'm not saying he understood every word he said but I know with a fierceness I can't describe that God holds Daniel and Gideon in His hands.  When I was in a season of discouragement and disappointment, God knew exactly what I needed to hear.  It's amazing how God works, how He uses words, songs, and little guys with autism to remind me that He is always with us, always faithful, always true.

This video was made when we got home from church and I asked Daniel to repeat it.  There are a few stumbles and mumbles and a forgotten words or two.  Nevertheless,he does an amazing job.

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ZOO! Our Latest Trip and My Five Tips to Make the Zoo a Great Experience

Each year for Daniel's birthday in May, we renew our yearly family zoo pass.  The price seems a bit much all at one time but, after doing the math, it pays for itself in about two trips.  Our children love the zoo.  It's probably their most requested "thing to do" so that family pass comes in handy.  But, look, with two kids with autism, crowded, busy, public places are kind of. .  . well, a nightmare.  It can be sensory overload times a thousand on a sunny Saturday at the zoo.

But, you all, I've discovered a secret.  This is how we make trips to the zoo manageable and fun for everyone.  Here is is: we plan our trips for the last two hours of the day.  You will not find us lining up at the gate when the zoo opens.  Instead, we'll be there for the last two hours before it closes.

"But, that's only two hours of zoo time.  You can't see everything in two hours."  I know and that's okay.  We see what we can see in two hours and then we save the rest for another day. Before we even get there, we ask each of the kids what they'd like to see that day and we make sure we get to those exhibits.  We also get zoo maps for the older two and let them "navigate our course."  This is fun for them, great for me (my sense of direction is broken and my map skills are questionable.  You do not want to be lost in the forest with me.  We will die), and, although the kids don't know this, it's educational too. Two hours is also the perfect amount of time.  When we got to the zoo, they kids were excited and ready to explore, but around the two hour mark, they start to look like this:

Two hours seems to be about everyone's (parents included) threshold for zoo fun.

But wait, there's more (yup, I totally sound like an infomercial). The last two hours of the day are the best two hours of the day.  Seriously.  First, living in the Houston area in July means temperatures in the 90's and humidity of 150% (you think that's not possible but come here in July and you'll see I'm not making that up).  In the evening, things start to cool down a bit or at least become slightly less inferno-like. Parking is also much more readily available in the late afternoon. This also means the zoo itself is noticeably less crowded.  There aren't hordes of people to contend with and that immediately makes the trip smoother for us. Less crowds and noise means more fun for our family!

Now, 5 p.m. might be close to dinner time for most of us.  Make sure to bring snacks and water, lots of water.  Our zoo recently installed water bottle fill up stations, which makes refills a snap. As for snacks, pack things that are individually wrapped and easy to eat while walking.  It never fails that five minutes after we've arrived (anywhere, it seems), someone is hungry.  Throw a granola bar at them and proceed to the bears.

Speaking of bears and lions and cougars and giraffes, you'll get to see all of these at the zoo.  Even better, guess what happens at the end of the day?  Feeding time!  But also, the nocturnal animals that always seem to be sleeping when you're at the zoo?  They're awake!  The animals showed up in a big way this trip.

In just two hours, we saw bears play-fighting:

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Cougars stalking our children:

A giraffe that would have licked Daniel if there wasn't that pesky glass:

An ostrich giving my husband the stink eye:

And we took mildly inappropriate pictures of the kids pretending to touch animals' bottoms.(We are that family).

We only had one escaping child (not anywhere close to the gorillas) but he only made it as far as the carousel (which we got to ride for free because it was late in the day, there wasn't a line, and the attendants were awesome).  By an hour or less until closing, all the food establishments are closed and the zookeepers have completed all their talks.  But the lack of crowds far outweighs those things for us.  I can see it in our chldren too.  They are calmer. They have more time to see the animals they'd like to see. They are enjoying themselves more.  Gideon, in particular, seemed to have a wonderful time.  He was fascinated with the animals and engaged and mindful of what was going on around him.

Gideon, checking out some ducks and turtles

Going on outings, for our family, can be very challenging so it's important for us to find ways to make it easier.  We go on these excursions knowing there will be mishaps.  We go, as parents, knowing that it will probably not be fun for us at all.  But we go because these experiences are important to the kids.  Why not try to make them as fun and enjoyable as possible?  Just making a few simple changes to our schedule or remembering to pack an extra snack can make all the difference for us.

Here's what I've found to be my top five tips for the zoo:

1. If you can swing it, get a year family zoo pass.  If you plan on going to the zoo at least twice in a year, it's paid for itself.  We try to go at least once a month.  Your zoo pass also gets you discounts on food and at stores in the zoo.  Plus, many zoos participate in a nationwide reciprocity program.  My zoo pass also allows me entrance into over 150 other zoos for free or at half price.  How cool is that!?
2. Take your trip to the zoo the last two hours of the day.  Check your zoo hours and also makes sure to check the cut off time for allowing visitors in.  (For our zoo, it's an hour before closing). I promise there's better parking and less crowds.  We find a noticeably less busy zoo on any day of the week but Monday thru Thursday seem to be even less crowded.
3. Take snacks and water.  Hydrated kids with full bellies are way happier and more fun. Not many food establishments/snack shacks/etc will be open that late in the day so make sure you're covered.
4. Give your kiddo a map of the zoo and have them plan out your course. Maps seem to be something my oldest son with autism is drawn to so this helps to keep him involved and interested. Plus, if you can sneak some good skills practice in there, all the better.
5. Have each child choose the one animal they need to see and make sure you get to see them that day. Then relax and enjoy yourself.  Don't kill yourself trying to see everything at once. Your trip will be rushed and less fun for everyone.

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Brothers: A Story in Pictures

Maybe it's because I had a sister growing up, but I've always been fascinated by the relationship between my three sons.  Our family dynamic is different from most because two of our boys have autism.  And yet, I see how they turn to each other without thinking, how they play and laugh, and how the fight and make up.  This is the story of my boys in pictures.

First, there were two of them.

Daniel and Ben are 21 months apart.  Almost from the beginning, their personalities were night and day. One quiet, a bit standoffish, always choosing books over people; the other chatty, a people pleaser, and never wanting to be alone.

Gideon came along 17 months after Ben, proving emphatically that God does have a sense of humor. Three boys in three years.  Oh. Boy. Oh. Boy. Oh. Boy.  Gideon brought a new dynamic to our family.  As the third boy, he was also the third opposite.  (Some of you know exactly what I mean by when I say that).

By the time this picture was taken, Daniel had been diagnosed with autism.  The diagnosis made things different and not different all at the same time.  The brothers didn't know a thing about what autism meant.  To them, nothing changed at all.  They still fought and hugged, got on each other's nerves and giggled. 

These two are just 17 months apart and Ben has always looked out for Gideon.  Gideon isn't quite two in this picture (yes, I kept his hair long and flow-y until he was two) but I had begun to suspect he had autism by the time he was 18 month.

Ben has never been one to leave Daniel and Gideon to their own devices.  He was also talking to them, always, and encouraging them to play with him.  By this time, Gideon was just over two and we had started the evaluation process. He was officially diagnosed with autism two days before Christmas.

Gideon's autism became more pronounced as he got older.   Autism looks different in every person and that includes our two boys.  What worked for Daniel, didn't work for Gideon.  It's made for many challenges, both as parents but in finding therapies and treatments.  Still, the boys found ways to have fun together..

Of course, pictures of them all smiling and looking at the camera are rare, like unicorn rare.

Katherine came along four years after Gideon.  The boys seemed to take it in stride even when she insists on being in the middle of everything the boys do.  As you can see, her addition to family photographs did not make picture-taking any easier.

The boys have always shared a bedroom.  First out of necessity and then because they liked it that way.  When they were younger, I would find that Ben crawled into Gideon's crib to nap with him. As they got older, inevitably, each morning, I'd find a couple of them sharing a bed together.    A couple of years ago, we smashed their three beds together.  The boys rarely go to sleep right away but I don't bother them.  I like hearing them giggle and whisper to each other.  They often turn on the closet light and read books together.  It makes my heart so happy to know in these quiet, hidden moments, they are "being brothers" together.

Some days as a brother aren't so good. (Ben didn't like the seating arrangements).

Some days with brothers are full of fun and play . . .

and more than a few fights. (You can read more about this epic photo session HERE).

But the good times always seem to outweigh the bad for them. I'm not sure if it's because they are so close in age. Maybe it's because of the unique role autism plays in our family.  It could just be how their personalities have unfolded.  But I know this: these boys will always have each other.  I know that as they get older, in one way or another, they'll grow stronger as brothers.  They will always have someone to share whatever life throws at them and a shoulder to lean on.  I'm not sure what that will look like and I know it won't always be easy.  I pray they will always find ways to laugh and encourage one another.  Sometimes, as we've learned in our family, words aren't necessary. Sometimes, the most important thing is always being there.  And that's what I pray for these boys--that they will always be there for each other.

One final picture, one of my favorites.  All smiling, all looking at the camera.  All together.

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Three Things Autism Parents Need to Hear

Having a child diagnosed with autism can feel like your world has completely shifted.  I know this because it's happened twice to our family.  Two of our four children have autism spectrum disorder (ASD).  I remember when our oldest son was diagnosed, I was four months pregnant.  I curled up into a ball on our bed and cried for hours. When our third son was diagnosed, I was more prepared for the words and I only cried at night when no one else could see me. I cannot begin to explain to you how difficult those first few months were.  I was inundated with more information than I knew what do to with--ABA therapy, occupation therapy, sensory processing disorder, speech therapy., pediatric neurologists, biomedical treatments, special diets, the best way to deal with insurance companies. That's just to name a few.  It's a bewildering, confusing time and, looking back, I'm not sure how I survived it.

If you have a friend or family member who has just had a child diagnosed with autism, you may be feeling helpless yourself.  You want to be a friend but you don't know what to say or do.  Here are three things I needed (and still need) to hear:

1. "I'm here for you."

Having a child with autism affects all areas of my life, including my friendships.  At any given time, I can feel: exhausted, worried, scared, or angry  100% of my energy goes to helping my children and that means many other areas of my life fall to the wayside. So, the truth is sometimes I am a terrible friend.  It's not intentional or mean-spirited.  It's just what my life is like right now. More than any other time, I need to know that my friends haven't given up on me.  I need to hear, "I'm here for you" from my people.  Those simple words mean the world.  Sometimes that looks like a text message checking up on me.  Sometimes it's a quick note or email.  Sometimes it's kidnapping me for a break and a cup of coffee.  Just knowing I have friends to lean on now and then is so very important to me.

2.  "I love you and your family."

Our family will always be different.  Our children will always have struggles.  Sometimes those struggles are very public (think meltdown in the middle of a parking lot) or very private.  Either way, \autism has changed our family and, for some people, changed how they see our family.  What I need most in these times is to be surrounded by people who are on our side.  I need to hear, "I love you and I love your family," and I need you to mean it.  I need you to love and accept our family just the way it is, not matter what it looks like.

3.  "I support you."

After an autism diagnosis, autism parents get a lot of advice.  I mean, a lot.  From everyone.  "Oh, I read an article about autism.  This is what you should do."  "My neighbor's best friend's son's boy has autism. Have you thought about this?"  Your doctors will have advice.  Your family will have advice. You'll have so much advice, you can start writing a column for the local paper.  The thing is that there are a plethora of approaches for the treatment of autism--medical, psychological, therapeutic, holistic, biomedical--and each parent gets to decide what is best for their child.  As a friend, your job is to simply say, "I support you. I know you're doing what is best for your child.  I support you."  No judgement or extra advice (unless it's asked for), just support.

I know these three statement seem small and inconsequential.  It doesn't seem like you're doing much to help out, does it?  But you are.  During the months after an autism diagnosis, autism families need to be surrounded by people who love and support them more than ever.  Even now, seven years after our first diagnosis, it means everything to know I have friends and family that are walking this journey beside me, loving our family even when it's not easy, but always willing to remind me that we aren't alone.

The One Reason We are Homeschooling (and Yes, There's Only One)

For those of you who are new readers, I have four children.  Daniel, 10, Ben, 8, Gideon, 6, and Katherine, 2.  Both Daniel and Gideon have autism.  Ben is 8 going on 35 and Katherine is, well, she's two.
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Over the last month, my husband and I have reached a decision. It's a big one.  No, not what series we're going to watch next on Netflix.  (Although, suggestions are always appreciated there).  This decision is something we've thought long and hard about and here it is:  Next year, we will be homeschooling our two oldest boys, Daniel and Ben.

We didn't make this choice on a whim and I'd wager it was one the harder decisions I've made recently.   Am I nervous?  Yes.  Do I have a fear that I could possibly be screwing up our children?  Kind of.  Do I think I can handle it?  I have no idea. But the reason for homeschooling, and there's only one, is such a big, hairy one that I'm going to have to get over my issues and just do it.

First, though, let me clear up a few things up.

We are not homeschooling because we hate the public school system. I don't.  I believe if all parts are working properly, the public school system can be quite successful. Over our last three years at our local school, my boys have had wonderful experiences.  We have loved all of our teachers and aides (and I'm not just saying that because several of them might very well be reading this right now). School, for the most part, has been a very positive experience for us.

We are not homeschooling because we hate high stakes testing.  Although, let me clear, I do hate high stakes testing.  I don't particularly care for how the curriculum is tailored to passing the test.  It takes a great deal of control out of the teachers' hands.  The teachers, you know those people who are passionate about kids and learning and went to school to get to degrees to do their jobs and do them well, are often required to teach certain curriculum in a certain way.  As a former teacher, I know how frustrating that can be.  Also, just to be clear, I'm not wholly against standardized tests when those tests were used as they were intended to be use.  Their original intent was to be a tool for teacher, to see where students had gaps in knowledge and therefore tailor teaching appropriately.  Sadly, standardized tests have now become the end-all-be-all of education and, as an area superintendent once told me, kids aren't faces anymore, they're just "a social security number and a score."

We are not homeschooling because we are worried about the negative influence of other children and society at large.  Of course, we're careful about what we expose our kids to and, yes, they've discovered "new" things at school that we weren't thrilled about (ie. a certain underwater sponge I could have lived my life never hearing about).  But we talk to our children about these things and it's opened up good conversations.

We are not homeschooling because we feel school is unsafe or our children have been bullied. One of my biggest concern when we started school was that Daniel would be teased because of his autism but we've seen just the opposite happen.  The students have all rallied around him.  They don't seem to mind his idiosyncrasies and, in fact, Daniel has earned a reputation as class clown.  He makes the kids laugh; the kids look out of him.

Honestly, there's only one real reason for choosing to homeschool our two oldest boys and it's this:  It is the best thing for Daniel and Ben.

That's it.

This past school year, Ben has struggled and struggled in the areas of writing, reading, and language arts.  In October, his teacher called me in and expressed concern.  She suggested that Ben be evaluated for dyslexia.  As I read more about dyslexia and watched Ben and how he struggled, my gut told me this was a real concern.  After two evaluations, Ben's scores are "too high" for him to qualify for any additional help.  Ben's teacher and I were stunned by these results.  The second evaluation done by a third party doctor (as requested by me and paid for by the school district) diagnosed him with a learning disability in written expression.  We were told that a year from now, he would likely qualify to receive services; right now, he's able to compensate.  "Let him fail the state test," she said.  "Then they'll {the school} will pay attention." But we cannot sit back and watch him fail.  Ben is a smart, sensitive guy and we have watched his self-confidence take a nose-dive this year.  He sees himself failing and he doesn't know how to fix it.  He's literally the kid falling between the cracks in our public school system and, sadly, he's not the only one.

The teachers, diagnosticians, and administrators have worked with us all year.  We've tried to come up with a good solution but their hands are tied.  Our state education agency creates the requirements for receiving special education services and school districts are bound by it.  Our state is one the most difficult to receive special education services in.  So, Ben and kids like him don't get the help they need and they fall further behind until they do qualify or just stop trying.

Our family cannot afford private school or private tutoring or specialized readings programs (some of which cost up to $2000 a week).  But I can provide him with one-on-one instruction at home.  We can go back to "the beginning" and we can work towards mastery.  This next year at home will be about building Ben's self-confidence as well as his reading and language arts skills.  This next year will be about giving him a solid footing and, I pray, a chance to reboot and love learning again.

Daniel, on the other hand, has had a more challenging year this year than ever before.  When I had my last parent-teacher conference this year, his teacher wrote: "Daniel is very smart, but he learns better one-on-one."  And he does, folks.  He really does.  Daniel could care less about tests (standardized or otherwise).  He doesn't give a flying fig about grades.  He is capable of doing the work but there are areas he's lagging in.  He does have in class support but not every second of his day and not just for him.  Daniel's autism gets in the way of school sometimes.  He will only work as hard as he's pushed and, sometimes, in a classroom full of kids, there's not time to push him as hard as he needs to be.  I hope with more time and one-on-one attention, we can see him blossom.

Incidentally, Gideon will be starting public school because we feel like this is the best option for him. Katherine, hopefully, will start a two day a week preschool program. One thing that has been pounded into me this last year is that each child is different.  Each of their stories, their struggles, and their strengths are different.  The solution is not one size fits all (just to make life less boring and more complicated).

I don't expect this to be easy.  I'm not under the delusion that I'll stock up on school supplies and a few math books and we'll be smiling and giggling all the days.   That's not going to happen.  This will be hard work because hard work is needed.  We have to unlearn how they've been taught to "do school" and learn how school will work in our house.  We will have challenges.  But for now, right at this moment, I am confident this is the best thing for Daniel and Ben and, in the end, that's what matters most.

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