Tag Archives: andrew anecdotes

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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And why not?

Six-year old Andrew and I stepped into the hearth room at the church. The place was fully buzzing with movement, noise, activity,  and voices. This was the day we’d been talking about together for almost a month. The day that we could help make some food (sack lunches) for the kitchen of the Salvation Army. Or, as Andrew put it “today’s the day we make food for the friends who don’t have enough”.  I wasn’t sure at first that the hubbub would be the best situation for him.  Most often, a room full of loud voices and multiple bodies in close proximity throws Andrew. He  finds himself highly stressed and uncomfortable; overstimulated to be exact. The result of such a push past his boundaries is never easy to predict or manage.  But he seemed determined, so we joined the fray.

As I helped him pull oversized blue latex gloves onto his small  hands, the glove tips extending past his fingertips by four inches, I asked him gently “are you ready for this?”

“Oh, yeah”,   He said, “this is the best day of my life!”

Then, hand in blue gloved hand we stepped up together. We had things to do, people to help, peanut butter sandwiches to make.  Side by side, he and I worked together for the next 30 minutes, bagging sandwiches and laughing up a storm.  He said “go team Mom” and I said “go team Andrew”  then, soon enough, the work was done.   I told him he’d done a great job, I told him I was really proud of him, I told him he was a good kid, I told him I thought the friends would be really happy with their food.

He told me “those friends are gonna like their sandwich.”  And then he asked “can we do that again tomorrow?”

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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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On youth and jubilance

giggles punctuate
each bounce of the yellow bus
as the wheels go round

 Hey, are we there yet?
I think I need the toilet.
5-year old madness!

 Addicted to joy
a Kindergarten field trip
is chaos I love.

Kindergarten trip

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Pardon Me

13-year old Emma and I were engaged in deep conversation about her middle school classes and curriculum. The two of us sat at the table on the screened in porch discussing a change in her class schedule which at first glance was causing her a bit of angst and worry.  As we chased together what it all meant (and as I tried to read not altogether too much into the drama of the moment) I asked her if she might like to have a tutor in the subject.

“No,”  she said, “I don’t need a tutor”

Six-year old Andrew interrupted, enthusiastically  “Hey, remember I had a tutor!”

“You had a tutor? When did you have a tutor?” I questioned.

“Remember, remember? I had a tutor and it farts!”

“It farts?”  I asked incredulously  “You had a tutor that farts?”  I choked back  my laughter.

“Yah. Yah. Remember? At Holland I got a present? A tutor that farts. Remember?” 

“I don’t remember, baby. What present? What tutor? What are you talking about?”   I wiped my giggle tears from both eyes.

Andrew began to demonstrate, gesturing wildly.  “Yah! I got a present at Holland and remember I opened it and it was a tutor, then you go like this”  He pantomimed putting something under his bottom and sitting down hard.

Light bulb recognition went off immediately. I  looked at Emma who held her head in her hands, a slight, wry smile upon her face.  “He’s talking about a whoopie cushion”,  she deadpanned.

“A TOOTER?”  I asked Andrew  “Is that what you meana tooter? Are you talking about the whoopee cushion that Kate gave you?”

“Yah!!”  He shouted, then giggled at me for finally getting it. ” Remember I had a tooter and it farts”

The conversation ended in fits of giggles and guffaws. I still can’t get over it. For her part, Emma never thought it was all that funny.  It just goes to show that the fart joker in me is just never, never, never going to grow up.

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Everything You Need to Know, You Learn in Kindergarten

“Hey Mom! D’you wanna know about the song we sing in Ms. Picco’s class?”

“well, of course I do. Tell me all about it”

*clears throat. begins singing*

“Sit down, sit down, everybody sit down…”

*smiles. sniffs. continues. with hand gestures.*

“Not on the ceiling, not on the door, not on people…”

*trails off… pauses.”

“Does it finish with ‘on the floor’ baby?”

“Um… oh, yah…’ but on the floor!'”

*laughs*

“Mom?”

“Yes, love?”

“D’you know what it says in the song?”

*begins again*

“Sit down, sit down, everybody sit down.
Not on the ceiling, not on the door, not on people’s butts,
on the floor!”

*laughs maniacally*

“It says that Mom. It says that really. It really, really does.”

*no reply. Mom can’t stop snorting*

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My Bad

I have a confession to make.
It’s not a bad, terrible, skeletons in the closet kind of confession. After all, this is not that kind of blog. But if you’re going to be reading here, this is something you should know about me.

I am directionally challenged.

This is not a well known  or well established mental disorder. In fact, I may be the only human to suffer from such a thing but suffer I do. As does anyone who is along for the ride.

Let me elaborate.

I grew up in Salt Lake City, Utah, where thanks to the resolute planning of the founders of that little town, everything streetwise is laid out in a very predictable, very organized grid.  The originating coordinates in the downtown streets   start at ‘0’ and count upwards and outwards from there. So, when you have a street address of  4646 South 3500 East, well, you can pinpoint on the grid exactly where that is and make logical sense of which way to drive to get there. Add to that the fact that surrounding the SLC valley there are mountain ranges, and any Salt Laker worth her salt knows that Mt. Olympus sits at the East of the valley offering a constant reference and resource for which way is what way.

This is not to say that I cannot get lost in Salt Lake City, because as I have previously divulged, I have a little directional problem. It’s a bit like dyslexia of roads. I have no sense of where I am going or where I have been when it comes to navigating streets. Seriously. There is no internal compass in my brain. I am always and forever lost whilst driving.

Now, don’t get me wrong. I can be taught and as we’ve traveled from city to city over the years, I have managed to ultimately triumph over the maze of streets and figure out how to get around. Not always well, mind you, but I can get it done.

The last 4 years of living in The Netherlands has helped me kind of forget this embarrassment. Relying chiefly on public transport or my bicycle (which means ALWAYS taking the scenic route) I haven’t had to opportunity to befuddle or confound myself in all that time.

But no more.

I am now doing my darnedest in the Midwest, where the town is NOT laid out in a predictable grid and there is no orienting mountain range to ground my equilibrium.  And by doing my darnedest I mean to say I am constantly lost.

To illustrate this point I give you a sampling of Andrewisms from the backseat as we  drive.

“Oh, Mom! What are you doing?”

“You goofed! You goofed! Oh, mom, you goofed”

“Are we turning around AGAIN?”

“Oh, man… this always happens”

At this point you are likely thinking, “why doesn’t the girl just get a GPS system for her navigational needs?”.  And I answer your internal query and tell you: “I have one”.  

Last week I was using said system to drive to a neighboring city to do a bit of shopping. I had an address and a general notion of how to follow the map on the screen. What I didn’t have was the ability to read the map, drive the roads and watch for speed traps. So, for all my effort to get to my destination without turning around a bazillion times, I got a ticket.  When the officer handed me my citation I thanked him graciously (that IS what you do, right?) and then told him “I’m not from here, you know… I’m just trying to find my way…”

He replied “It’s all good. Just slow down”.

Sage advice, really, for the girl who just doesn’t know where she’s going.

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