Tag Archives: these are the things I think about

Before May Flowers

April. Here in the States that means Autism Awareness Month. It is hoped, by those who organize such things, that a month like this will, well, grow awareness and concern about autism. Just in case you need a reminder I would like to state for the record:

I am aware of autism.

Our youngest son, Andrew, is on the spectrum. He was diagnosed in 2007 after many months (years?) of evaluation, observation, and assessment by those who know a lot about such things. He was four years old.  In the nearly five years since diagnosis I have had a few things to say about raising an on-the-spectrum child. Writing about him has helped me to process the journey and celebrate the being that he is. There have been moments of sorrow and moments of joy along the way. Indeed, there is angst; there is anxiety.  Also, there are questions; lots of questions. And, overall, there is growth and learning.  One thing that I am most certain I have learned along the way:

Autism is awareness.

One of the incredible things about the incredible boy I am raising is his heightened state of awareness of EVERYTHING that is happening around him. The experts say that, for those of us with neuro-typicality, our brains have an ability to filter noises and prioritize what we should focus upon as we listen, or interact, or engage with the world. Not so for the specially made brain with autism; rather, sounds and stimulation all come through at the same level of  volume, or speed, or overwhelm. It is much more difficult for a child with autism to distinguish noises and prioritize sounds to find focus.

Or, as Andrew says it: “I have very sensitive ears”.

And so he does, along with a very sensitive soul and an insatiable zest for life. Living with a this child on the spectrum is a daily lesson on noticing everything, the way he does. For Andrew, every, every moment in his day is a new adventure. Put him on a swing and he shouts at the top of his lungs with unmitigated joy. Offer him a new book to read (preferably about Power Rangers) and his whoops of delight are infectious. He tells jokes. He sings songs. He chatters incessantly. He hears everything. He is readily distracted by side sightings and wandering thoughts. When I forget to remember who he is (and sometimes I do) it can be frustrating, especially when attempting to make a departure from the house to reach school on time. But when I remember to be still and watch him, I am constantly fascinated by what fascinates him. His curiosity about the world is unending–he asks questions about how things work, why things happen the way they do, and what might happen next. He (like many children with autism) interprets things literally and it takes large effort on his part to open his mind to the idea that some things we say are not what they sound like.  Idioms are idiocy for a boy like this–after all, raindrops are made of water, NOT cats and dogs.

I have long said that Andrew walks at his own pace. Occasionally, that is at turbo speed (well. as fast as eight-and-a-half-year-old legs can run), but most often that is the sure and steady pace of the tortoise. He pushes along in his own time, always pressing forward in steady progress, but with a cadence that allows for him to pause, notice, investigate, and breathe it all in.  I am honored to be his companion for the journey.

My son has autism.

It makes me aware.

Please visit Cafe Press to order your Autism Awareness gear!

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Better Shop Around

He’s been waiting all day.  What he wants is a few minutes to browse with me on the world wide interweb.

“You know, Mom, on that site that has all the power rangers stuff, what’s that site called again, Mom? Oh, right. Amazon”

We arrive home after a post-school grocery shop stop. He helps me unload the bags from the car.

“After this, Mom, we can get on the internet and see those power rangers.”

I remind him that homework time happens before we can get on the computer. He says he remembers that and gets busy with his spelling sheet and a dot-to-dot of Clifford the Big Red Dog.  I unload groceries, chat with Emma, re-pot a houseplant, and arrange the lilies we purchased at Trader Joe’s.  He finishes his work and stacks his papers.

“I’m ready when you are, Mom. I’m ready when you are”

He walks to the stairs and stands sentinel at the bottom step, then gestures grandly with his right hand—sweeping it gallantly to the side and upward as if presenting the staircase itself at a gala event.

“After you.” 

We climb the steps, then he, positioned on my bed, coaches me on the best way to open my laptop and put in the search words that will open his world, nay, galaxy, to all things power rangers.

He’s shopping for the ultimate prize, you know. The one that he will earn by achieving 10 days in a row of what he calls “fantastic” days at school. It’s a rhythm we’ve created, his team and I, to motivate and inspire this boy to find his way in making the most of his school days.  In that small gap between working hard and melting down, an incentive like this keeps him focused. Eyes on the prize, as it were.

“Type in Power Rangers Rescue Megazord, Mom. That’s the best one, I think.”

I do. We find out that the toys from this particular (vintage) incarnation of the Power Rangers series that he loves to watch on Netflix are being sold at collector’s item prices.

“What does that mean, Mom? What is collector’s item?”

I explain how sometimes grown-ups like to collect kid toys and keep them in the boxes and then sell them much later when they can’t be found in the shops. That way the collector can sell the toys for lots of money.

“Oh. That’s why they are so expensive. Why don’t they just take them out of the box and give them to kids to play with the toys?”

I pass on explaining the economics and eccentricity of collecting and we keep looking at what is available on Amazon. In the Power Rangers section, anyway. He’s rolling over the hiccup of a $600 Megazord and continues to be enthused about what else is on offer–within my budget–on this great big shopping site.

After all,  he’s been waiting all day.

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Ease on down

I am the mother of three children. It’s a point of pride for me, my parenthood. I laud it as the hardest job I’ll ever have, yet fulfilling in its own peculiar ways. And fun, most times. But hard. Did I mention that parenting is hard?

My children are now 18, 16, and 8.8 years old. So, if you’re doing the maths that makes me 42.8 years worth of wise as I learn the art of parenting. Perhaps by the time I am 100 years parenting wise, I’ll be pretty good at it.

As you might imagine, raising two independent teenagers and one ultimately special guy, we have some great family moments and very funny stories to share. And some poignant, heart-moving experiences that we hold close. That’s family life, right? We are a kaleidoscope of sights, sounds and sensations; keep turning us ’round and you keep making vibrant images of light and color. There’s always a story to tell in this house. This is one.

16-year-old Emma took her drivers permit exam yesterday. And she passed. (Yay, Emma!). After our 2 hours of waiting fun at the Motor Vehicle Division we walked out to the car together, she a little giddy at holding a freshly pressed permit, and me a little proud that she’d knocked it out of the park with the test.  We drove out of the parking lot and then, a few minutes later,  I pulled over on a side street and swapped her places in the car.  She sat in the driver’s seat and adjusted her seat and mirrors. Anxious, giggly, with a tint of additional emotion, Emma pulled onto the road and drove. It wasn’t necessarily her first time at the wheel but it was the first time to be ultimately responsible for both the car and the journey.

Starting.

Stopping.

Starting again.

My baby girl established her presence in the driver’s seat. And though the road is long, she’s on her way.

I couldn’t be prouder.

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Where the heart is

If  I am part of your feed, it may shock you greatly to see this pop up in the reader. I’m not sure I’m sure about what I’m doing. Or how long I’ll be doing it. Again. The one thing I do know is that my fingers are itchy to write, so that is what I shall do. Right here.

Quickly, here’s the sum up. We’ve moved. Again. This time a full circle return to the very place we left six years ago. And by very place I mean VERY PLACE. We are living in Phoenix, Arizona in the SAME HOUSE we lived in before. That’s a bit of a story in itself, and it’s one that might be told here soon enough, but for now that’s what you need to know. I am teaching, the kids are schooling, and my man has returned to the world of the courts.

We are living in Arizona.

We are home.

That, perhaps, is the very thing I wanted to write about: home. If you’ve read me much, you’ll remember that I’ve oft expressed the way my writing takes me where it wants to go, far and away more often than my own thoughts dictate the course of the essay. I am used to it. The only thing I know to do when my fingers itch is to get my fingers to a keyboard and write. Here I am.

This is what I’ve been thinking about.

Home.

In recent years we, as a family, have had a few of those. In a few places. Houses of loveliness and practicality, one which we still own in addition to this one where we live. In six years there have been six houses–or dwelling places–on two continents, in two countries, two states, and five cities.  Each with their own stories and adventures attached. And, here’s the interesting bit, we’ve been home every time, in every house. Yet, I proclaimed at the start of this piece that we are home here. And while I am sure there are many who’ve waxed poetic in a variety of ways on what makes a house a home, I think I’d like to add my thoughts.

Because I get it.

Home is not a place. Home is a heart state. Meaning, when you invest yourself in the locale, the culture, the neighbors, and the whole experience of the place you live you find yourself at home. For me this is a most defined effort to create and sustain a people community. I like people. I need them. So, whether I am living near my dearest friends, finding new friends in a new city, reuniting with people from my past, or even connecting with those friends I’ve not yet met in the flesh, I know that where my people are, that is where I am home.

Arizona, Missouri, The Netherlands; it’s all the same. Home is what I carry with me.

The house location just doesn’t matter.

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For two

The kettle is whistling on the stove, making its plaintive cry of boiling-boiling-the-water-is-boiling, as the steam races from the spout. I love that sound. For me, it’s the reflective recall of dozens of lovely tea memories. As a child, in a non-tea drinking household, the whole concept of tea was a bit foreign, though I did my best alongside my sisters and friends to affect a proper tea party with our miniature dishes and stuffed animal party guests. I discovered tea as a drink proper when I reached my teen years and began sipping herbal concoctions and felt altogether sophisticated for doing so. In my early adult years I was lovingly chided about my lazy-tea preparations, and then instructed in the proper way to brew, prepare and enjoy a cuppa by a Londoner lost in the desert southwest. I do love tea, even when I’ve lapsed to the lazy microwave-warmed-water-teabag-in-a-cup preparations.
When we arrived here to this midwest home last summer and did our shopping for the essentials we needed whilst waiting for our shipment to arrive from The Netherlands, I bought a kettle. It is a cherry red, metal, stove-top kettle with a handle and spout. It’s my favorite kitchen appliance. As it whistles today, I watch the steam rise and listen to the song it sings, and I see the metaphor of my morning tea. As the water pours over the teabag today it occurs me that in order to make it work you have to jump right into the hot water. Jumping in headlong allows something to be released; then something wholly new  presents.

I’ve struggled lately with my feelings of displacement, homesickness, and the touch of lonely I feel here. I understand intellectually and conceptually just what it takes to move and settle into life in a new place. We’ve done this before, we’re simply doing it again. But as I watch the steam rise gently off my cup as I write it’s suddenly very clear to me:  the time has arrived. It’s time to jump in, release the fear, find the new and drink it in.

Time to share a cuppa with a local friend.

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What you will

The truth is, there aren’t many moments in my life where I am without words or thoughts to share. Not many, no, but  there are a few. And in those times it’s not as if the words have dried up, or the thoughts don’t flow. It’s more that there just isn’t time to chase them to completion and align them into coherent structure.  My mind runs chaotically, directly counter to the way I wish it did.  If I could design it, there would be nothing but linear logic flowing out. Instead, what I’ve got is a convoluted water slide structure where tubes cross but never connect, waves splash wildly, droplets disappear into other designs, and it’s never, never quiet.

Reflection of the way I was raised, possibly.

I am the third of six children, my entrance into the world just four years prior to the dawn of the 70’s. That puts me smack dab in the middle of my 40’s this year, in case you’re wondering. After two boys, I was first born girl and following me are two sisters and a final baby brother to round out the even-steven three boys, three girls family. A family of six rather individual individuals. Among us, there are dancers, musicians, actors, writers, teachers, bankers, therapists, and craftsmen. Some of us are all of those things.  Not one of us is a particulary quiet person.  When the six of us began gathering mates, dates and spouses, the common theme in response from all of those “outsiders” who would soon join us, was the response of just how big, and loud, and warm, and overwhelming , and wonderful it is to be among us.  It’s a fact and an unchangeable one at that.  Truly, I didn’t know what still and quiet actually meant until years after leaving my family house and discovering the joy of such a place inside me and without.  I don’t say that to knock the noise and wonder of living it all out loud, but only to mention that the quiet has merit of its own.

So, I’ve been quiet here. You may have noticed, and even if you did not, I’m telling you so now. Quiet can be good for someone whose water park thinking had stayed open round the clock past the season. It’s not a shutdown, just a visit for maintenance. I’d say all kinds of things here about the whys and the wherefores of this feeling like neccessity, but that tends to make me sound as if I’m whining. Whining, I don’t do, if I can help it.

Writing, though, that I will do.

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Simple pleasures

Don and I just marked 20 years of marriage together. 20 years. That’s a lotta time logged in a career endeavor.  There are loads of things to say about how and why and how lucky I feel that after all this time, we’ve still got something going on, but today is not the day I am going to talk about that.  I really want to talk about something else.

I will preface this succinctly.

I am, and have forever been, a broadway musical fan. I love the form and the format of a story told with music intermittently inserted. I know the formula is not for everyone and there are those who prefer their theatre more classic in substance and less maudlin.  However, I am a fan.  Don, whether by choice or force over the  years, also loves the theatre, and from stage plays to musical he’s long been my companion at a show. As a matter of fact, he’s been the planner and the purchaser of the theatre trips we’ve taken over the years to both New York and London. He attributes his love of theatre to his “one gay gene” , but no matter what is at play there, I am glad for his company. Always.

Yesterday, in celebration of our anniversary, I booked tickets for a show at the premier theatre here in St. Louis. The show, In The Heights, gathered 4 Tony awards in 2008, including the Tony for Best Musical.  It’s an exceptional musical, full of vibrant color and choreography, with an overall message that family matters, that home is where one is happiest, and that life, for all its challenges and hard knocks, isn’t all that bad.

In a particularly poignant scene, the community grieves the death of  Abuela Claudia, who, for all intents and purposes,  is the grandmother of all in the block. She is loved deeply and admired greatly; the embodiment of wisdom and grace, and a guiding light for her family and neighbors.  Simply put, she is the woman I want to be.

As the residents gather to grieve together, to remember her and  (of course) to sing her goodbye, we are offered a glimpse into what may just be her personal philosophy for life.  From the lyrics:

Abuela Claudia had simple pleasures
She sang the praises of things we ignore
Glass Coke bottles, bread crumbs, a sky full of stars
She cherished these things
She’d say “Alabanza”
Alabanza means to raise this thing to God’s face
and to sing
Quite literally “praise to this”

I don’t know if I can really capture here what it meant to me hearing it there. This simple notion of recognizing in moments, in people, yes, even in things, that there is goodness and beauty which is worthy of our praise. I can tell you, it’s something I have considered before, and even work toward as a means to being a better person and living a more deliberate life, but yesterday, in the height of the dramatic moment on the stage I was absolutely struck.  I want that. I want to be that person who is living life every minute; who is noticing good and goodness even in the hectic chaos of getting it all done in a day.  I want to be the kind of person whose goodbye song is just like this; sung by those who loved me and whom I loved.

It’s simple. Right?

MUSIC MONDAY
hosted by Soccer Mom in Denial

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Commune with me

My name is Jenn and I have a child with autism.  And while that doesn’t require a choral response as greeting: “Hi Jenn”, I mention it at the beginning as a point of reference for what will follow. Raising a child with autism grants me no license for specialness, especially in these years where the diagnosis of those on the spectrum is at an all time high. Nor does pasting that label onto my six-year-old son indicate a single thing that is better or worse, in relative terms, about him as a human being, or about parenting him. What it does offer, that word, is an opportunity to look at a variety of things that I hadn’t investigated before in raising neuro-typical children. When Ian  came along, there was already a magnificent stack of books in my house awaiting read through and referral as I learned the art of parenting. Emma’s arrival, two years after Ian,  also included an additional set of books and learning. It is lovely to have all that reference on the shelf  (and there is a magnitude of option available for parenting at all stages).  Maybe it’s altogether too much expert opinion, but all for all, it’s nice to have it around.

Andrew’s entrance into our lives required some dusting off of the old titles and the re-crack of book bindings as I attempted to recall the fine points of having an infant around once again. (It’s funny what you can forget.) Diligently, I turned pages and re-read passages, ultimately coming to the conclusion that these books on raising kids weren’t the books for raising this kid.  It would be years yet before I would have clear direction on exactly what to research and where to look for the expert opinion.  Andrew was nearly 4 years old when he was definitively diagnosed with Classic Autism Disorder. Up until that time I had the broad range parameters of  “delayed milestones”, “slow development”, “late talker”, “picky eater” as I conducted my deep (no kidding) google research on what could be going on with my son. I’ve done a lot of reading.  No, really A LOT of reading.  Along the way, I’ve been helped along by true experts in the field of child development.  It was with encouragement and support from  a dear friend who knows and works with children like Andrew that I aggressively pursued observation and achieved a diagnosis. Not that I was all that interested in a label for my son, quite the contrary is my actual attitude on that issue, but because in this world of words a standardized DIAGNOSIS means SERVICES. Without a WORD, there will be no funded support. Simple.

And so, we have a word.  A loaded word to be sure and its application to Andrew is singular. The same way its application to another child with the same diagnosis is unique to him/her and means something different to the family who supports them. Which is to say,  autism is a spectrum disorder–its symptoms and characteristics can present themselves in a wide variety of combinations, from mild to severe. Every case is unique. Every child is uniquely affected.  And if you know children at all, then this is an instinctive set of facts, it should come as no revelation or shock that we are unique and individual. Even when we belong to a category.

Our return to the USA has brought several challenges as we’ve settled  here in Missouri. One of the more vigorous tasks has been to set the wheels of a public school system in motion in regard to Andrew and his history. It is an intense process to identify your child on paper and grant leeway to professionals and educators to observe, document and assess him.  Add to our experience the interpretation of medical records, diagnoses, and educational records most of which required a literal translation from Dutch to English, and many for which long explanations were accepted as the difference in school systems was identified. Which is all to say that Andrew’s Kindergarten file is pushing phone book thickness.

But today, he has an IEP in place and in action for his Kindergarten year.  His Individualized Education Plan was brilliantly organized as his “team” designed goals in all aspects of his learning. I don’t know when I’ve ever been happier to sign a document.  As I sat with the (his) counselor, the (his) teachers, and the (his)speech and occupational therapists I was overwhelmed with the recognition that this was a group of individuals united in their effort and devotion to Drew.  He has a support network in place that we’ve heretofore never experienced. But the emotion is in the understanding that it’s not Andrew’s support network alone, it’s mine too. And Don’s. And Ian and Emma’s as well. I look at that extended benefit as cherry on top in this situation.  We’ve long been loved and supported by friends,  family, and friends who are our family. Now, we add to the mix the dedicated support of some folks who just may know what they’re talking about.

My name is Jenn. I have a child with autism.

And I have a village.

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Table it

“So, Mom, you got a delivery.”

“Yah, I saw that! I’m excited.”

Why did you order a massage table?”

“It’s gonna be my Reiki table.”

“Serious?”

Totally.

“Are you starting a Reiki business or something?”

Yup. That’s what I’m thinking.

“Oh, cool. Can I be your first customer?”

Absolutely.

“I’m going to tell all my friends. ‘you think 8th grade stresses you out, come see my mom’

“Excellent. I like that.”

“Oh, yeah, we are such hippies. It’s awesome.”

 

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