Where Have I Been?

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Where have I been, indeed.  I’ve been missing in action for a while, and I just want to keep everyone up to date on what’s going on.  I’ve been blogging for an awesome new site called www.kokuanetwork.com

Kokua Network is a free site devoted to providing all sorts of useful information to families of individuals with disabilities.  From birth to early intervention, to sorting out the differences between an IEP and a 504 plan, to primers on Special Needs Trusts and transition to adulthood, Kokua Network aims to be your one-stop information center.

They’ve asked me to write their blog, so I’ve been posting there for the past few weeks.  I invite you to check it out.  I’ll post more here soon, too.  But for right now, I’m trying to focus my attention on letting people know about Kokua Network and all that the site can do for them.

So, come check it out.  Drop us a line and let us know what you think.

Thanks!

Summer Day

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Let me start by saying that waking up and putting workout clothes on right away is no guarantee of future workout.  It just means I’ve somehow, irrationally, become insanely optimistic in the overnight hours.  But it begins to explain why I spent the day in running clothes.  

Then we had swim team practice for the kids in the rain, which means that everyone who isn’t swimming (which is a group roughly comparable to the population of Lichtenstein) is packed in to the only spot in the swim club with a roof.  This spot is officially called the Pavilion, but my kids can never remember that word so they’ve taken to calling it the Babillion.  While that’s really not any easier to say, the name has stuck.

After that, haircuts for the boys.  And during Evan’s haircut, well . . . let’s just say nobody was injured.  That alone is enough to justify a reward of chocolate milkshakes for all.  And when ordering the shakes, I accidentally included myself in the headcount.  Oops.  So much for day two of the diet.

After dinner, friends stopped by, which turned into about an hour of muddy kids and lost dogs and lost kids and muddy dogs.  There was a lot of confusion but in the end everyone seems to have ended up in the right house with the right pets.  

And, finally, bedtime.  Glorious bedtime.  And tonight, an extra-special treat.  Tonight, I gave Evan an extra squeeze and whispered, “I love you,”  And then Evan whispered back, “I love you too.”

Well, well, well.  That’s brand-new.  But I don’t think anything I can say will do it justice, and no words will describe that feeling, so I’ll end here for the night.

iPad Update

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It has been nearly two months since Evan was issued his loaner iPad from the school.  The results have been interesting.  Evan has gotten pretty good at tapping on the pictures to answer our questions, but we have to basically shove it in his face and require him to do so.  We are trying to train him to verbalize his requests instead of merely leading us by hand to the things he wants.  So when he tries to drag me to the fridge to get the apple juice, I put the iPad in front of him and ask him “What do you want?”  At this point, he either taps the picture for “I want juice, please,” and then repeats that phrase after the iPad’s digital voice says it; or, he just looks at the options on the iPad screen and is prompted on his own to ask me verbally.

Evan's "home screen" for the things he typically requests at home.

Evan’s “home screen” for the things he typically requests at home.

However, the part he really loves is the mode in which he can type his own words or statements into it.

For example, recently at the pool he cozied up to me and tapped out the phrase “where the wild things are by maurice sendak,” and presented it to me, looking at me hopefully.  I had not brought the book to the pool, so that posed a bit of a problem.

A few nights ago, we had quesadillas for dinner.  Evan is a ridiculously picky eater.  While he will eat some things, most nights he has some sort of plain, grilled version of the chicken or beef that we are eating; no sauces other than massive quantities of ketchup.  He likes cheese quesadillas, though (no salsa, etc; just cheese in a tortilla).  On this night, I tried an experiment.  I diced grilled pork into very, very tiny pieces and mixed them with the cheese into the kids’ quesadillas.  Evan gobbled them, clearly not noticing.  He happily ate three helpings before asking to be excused from the table.

Later that night, after eating his dessert, he brought us the iPad.  He sat in his chair and slowly, patiently, tapped out a message to us.  When he finished typing, he presented the iPad to us.  Then he grinned, made awesome eye contact, and asked us, with full inflection in his voice (a rarity), “So, where’s some meat?”

"So, where's some meat?"

“So, where’s some meat?”

If only there had been a camera on Randy and I at the time.  We were absolutely flabbergasted.  A completely spontaneous conversation starter.  We tried to remember if that phrase existed in any books or movies he had seen recently, but came up empty.  I think we may have broken new ground.

As always, progress comes in fits and starts.  He still needs to be reminded to use the iPad for regular communication, and sometimes he just gets too annoyed or frustrated to do even that.  Sometimes he uses it to just type random words or phrases from books or movies, merely for his own enjoyment.  Other times, he seems to decide that if typing his favorite phrases on an electronic device is good, writing them on the wall is even better.

"Now, Stop!" Max said, and sent the wild things off to bed without their supper.

“Now, Stop!” Max said, and sent the wild things off to bed without their supper.

This is an excerpt from Evan’s little wall-writing project from earlier in the week.  He thought it would be a brilliant idea to transcribe the vast majority of Where the Wild Things Are onto the playroom walls, from memory.  Some communication is more stressful than others.

Clearly, the pattern that is emerging is that progress doesn’t come when and where and how anyone expects it.  As has always been the case with Evan, little bits of clarity and insight bubble to the surface in their own way and at their own pace.  We just have to keep trying to give him tools to let it happen, and we need to be available and pay attention when it does.

Language Barrier

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Cover of "Spanish Dictionary: Words, Phra...

Cover via Amazon

When I was in high school, I spent a few weeks in Spain as part of a school program.  My classmates and I were divided into groups of two or three and sent to live with Spanish families in their homes in Madrid, while taking classes and sightseeing during the day.  I think, at this point, I might have only been in Spanish Two.  My Spanish was, to put it generously, not very good.  I largely depended on my classmates to help me with communicating with our host, an older woman who did not speak English at all.

One afternoon, however, my American classmates were not around and I was at home with our host.  She asked me something—I forget what—maybe if I was hungry?  I don’t remember.  What I do remember is grabbing my Spanish-to-English dictionary in a complete panic and flipping through it furiously so that I could answer her simple question.  I was looking for a word for “later.”  In my panic, I forgot that I already knew how to say “más tarde.”  I ended up finding the phrase for “at a later date.”  My host first looked baffled, and then smiled.  I knew I didn’t quite get it right, and I felt rather embarrassed.  But I sort of got my point across.

I think of that story often when I work with Evan.  When we ask him a question, and we know he knows the answer but he just can’t find the words to tell us, I picture someone in his brain flipping through a little dictionary, trying to find a word that he knows he knows, but just can’t seem to remember.

A few days ago, I was still sleeping and Randy was in the shower.  Evan came into our room and opened the bathroom door.  He looked at Randy in the shower and announced, “Water Water Wet!”  He paused for a few beats, then again, “Water Water Wet Wet Wet!”  We praised him for describing the shower, ‘Yes, Evan, the water in the shower is wet.  Daddy’s taking a shower, so we are going to close the door to give him privacy.  He’ll be out in a minute.”  Evan wandered downstairs.  He then refused to sit at the table to eat his breakfast, again saying “Water Wet Wet!”  Hmmm.  “Evan, how about you go to the bathroom before breakfast?”  Randy led him into the bathroom in order to help him pull down his pjs.  That’s when he discovered that Evan was soaking wet.  He had wet the bed.  Water water wet, indeed.

Another favorite word is “stuck.”  Stuck can mean that his foot is stuck in the rung of the kitchen chair.  It can mean that his tooth is wiggling, but still in his mouth.  Stuck is used to describe a stuffy nose, a wonky seatbelt, or constipation.  I suspect it is sometimes his attempt to give us a little metaphysical update, as well.  Stuck.

Although Evan seems to be rocking his report cards in first grade, he struggles with abstract concepts and anything that requires higher-level language or communication.  He can tell time, read, write, and do addition and subtraction like a pro.  His spelling and handwriting are impressive.  But read him a simple story and ask “who was the main character?” or “where did the boy go?”  and you will get absolutely no response.  We know that the successive grades will require him to be able to communicate and display reading comprehension, so we are doing whatever we can to figure out how to get those words out of him.

His speech pathologist had him evaluated for assistive technology.  This can be any number of AAC (Augmentative and Alternative Communication) devices or techniques that could help bolster and encourage communication for Evan.  A representative from the county intermediate unit came to school to meet with Evan and to interview his teachers.  From the things she learned about Evan, she was to make recommendations.

That meeting was yesterday morning.  The result of the meeting is that Evan’s teachers will use a loaned iPad with some software that is pre-loaded for communication.  These applications (TouchTalk and Proloquo2Go) {nitpicky side note–why is everything run together as one word now?}  have been successful (when used correctly) in encouraging language use in kids like Evan.  Depending on the child’s level of cognition or schooling, he can tap pictures, make sentences from pictures, or type words into the iPad apps, and the iPad speaks the words or sentences he types.  Evan then must be required to repeat those words in order to get what he wants.  [Example:  Evan finds the pictures for “I want juice.” Or he types the words “I want juice.”  The iPad speaks, “I want juice.”  Evan does not get juice until he also says “I want juice.”]

This is similar to a PECS (picture board) system he used when he was much younger, but the iPad technology provides more robust language and allows more opportunities for growth as Evan’s abilities improve.

We must all (teachers, therapists, family) collect data on Evan’s use of the device, and if it seems to be working for him, we may be granted our own device in the future.  Evan’s siblings are obviously insanely jealous and wish they couldn’t speak so that they, too, could get an iPad.  Sibling compassion is no match for sibling rivalry.

While I’m hopeful that this technology could help Evan communicate with us, I have been in this game long enough to know that there is no magic pill.  We will try this out, and I will update everyone on our level of success in the fall.  At a later date.  Más tarde.

Aware Again

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English: Logo of World Autism Awareness Day, A...

English: Logo of World Autism Awareness Day, April 2, by UN (United Nations). Português: Logo do Dia Mundial de Conscientização do Autismo, 2 de Abril, criado pela ONU (Organizações das Nações Unidas). (Photo credit: Wikipedia)

As I have written before, we can track Evan’s late-March autism diagnosis directly with World Autism Awareness Day each year.  And, as I’ve mentioned in the past, that coincidence has been both a blessing and a curse.  The first WAAD was about 5 days after he was diagnosed, and the onslaught of autism information everywhere we turned was at once informative and overwhelming.

As Evan has grown and developed, so has the world’s understanding of his condition.  And, as was bound to happen, so have the ways in which people define, treat, study, and think about autism.  In recent years, I have noticed more rifts and disagreements among those involved.  Discussions and disagreements have gone from “What therapies are you guys trying?  We have been considering that; right now we are researching this one” to “I can’t believe they are still doing that.  Everyone knows that this is better.”

These differences have also spread to the organizations that represent the autism community.  For the past six years, our family has chosen to help raise funds for Autism Speaks.  Years ago, we noticed that they seemed to be the most globally organized powerhouse when it comes to research funding, lobbying efforts, and public information.  However, there is also a host of phenomenal smaller organizations that are focused on other important issues related to autism.  And, as happens in so many other arenas, the large powerhouse can do things that negatively affect the smaller organizations.  (Cancer survivors who have tired of seeing that familiar pink ribbon know how this goes).

For us, this means that we also try to support a handful of smaller organizations that we feel are doing great things.  I try to stay away from heated rhetoric that pits one well-meaning organization’s members against members of other groups.

I also reflect on our progress as a family and, most importantly, Evan’s progress as a person with autism.  I realize that without the high profile of the large organization, our community would not have nearly the resources or understanding that we enjoy now.  I also recognize that without the efforts of those who were in this business long before Autism Speaks came around, the therapies that benefit Evan most would never have been established.

But mostly, I look at the people around us who continue to amaze us.  This month, a bureaucratic disaster led to Evan (among many other children) mistakenly being dropped by the state, which meant that some of his most necessary services would no longer be available to him.  In the days that I spent untangling this mess, I encountered truly selfless individuals, some working free of charge, to help us get what Evan needs.  Nobody asked what group I back, what our philosophy on scientific research is, or what behavioral approach we follow.  These people simply put Evan and his needs ahead of all else.

We are now halfway through Autism Awareness Month, and my wish is that all children receive the access, understanding, and care that they need.  (In case you are wondering, far too many do not).  I hope that legislators, researchers, school districts, fundraising groups, and academics can put personal agendas aside and work together toward common-sense solutions to help this generation of children.

Bath

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Three rubber ducks in foam bath

Three rubber ducks in foam bath (Photo credit: Wikipedia)

Evan loves water.  He loves to swim, and loves oceans, and rivers, and baths.

He loves water so much that once he left a neighborhood party (in early May), and wandered onto a neighboring property.  He shimmied down an embankment, walked along a retaining wall until he got to a low point in the wall, and jumped down, into the pool area.  I noticed he was missing, ran across the front lawn of the house we were visiting, and saw him down in the next door neighbor’s backyard pool area, standing on the edge of the diving board.  He was peering down toward the water, grinning, and flapping his arms.

I simultaneously screamed for my husband  (or maybe I just screamed unintelligibly, which is far more likely) and ran toward the pool area, hoping that the gate was unlocked so I could get in without any of the gymnastics Evan had performed.  By the time Randy and I got to Evan, he was in the water.  We reached down and yanked him out…cold and sputtering, he looked at us for a second, and walked off, splash splash splash, down the driveway and back to the party.

Since then, we’ve really worked very hard to keep him out of the water.  (We’ve also worked on his swimming skills).  We’ve never had to try to get him into water.

Until last week.  Last week, Evan decided that he has had enough water and never wants to get into the bathtub again.  Not that he told us this.  He didn’t have to.  He just stood outside the tub, buck naked, looking in, and refused to move.

Evan’s a skinny kid, but crazy strong.  Have you ever forced a 50-pound naked kid into a tub?  It isn’t easy.  Ever tried to reason with a naked autistic kid?  Virtually impossible.

We’ve had conversations like this.  “Evan, get in the tub.”
Evan:  “Get in the tub.”

Me:  “Evan, get in the tub.”
Evan:  “In the tub.”

Me.  “Evan.  Look at me.  Do I look happy?  Or Angry?”

Evan:  “Happy or Angry.”

Me:  “Mommy is angry.  You need a bath, Evan.”

Evan:  “You need a bath.”

Finally, I put one of his favorite Youtube videos on my phone.  I get the video queued to the opening scene and pause it.  Evan yells.  I tell him I will play it when he gets in the tub.  He dips a toe in.  I press play.  He pulls the toe out and up into the air.  I press pause.  I tell him to stand in the tub.  He puts his toe back in.  We go on like this until I start demanding that he stand with that foot in the water and put the other toe in.  Play, pause. Foot in, play, foot out, pause.

This goes around and around for an hour or so.  AN HOUR OR SO.

The next night we repeat it, maybe getting him standing on both feet for the duration of the six minute video, while we essentially sponge bathe him in the tub.  On subsequent nights, we move to squatting down, kneeling, sitting with one arm raised up in the air (we still have no idea what’s behind that move).

During the day, we remind him, “Evan, tonight you’re going to take a bath, right?”  He looks right at me, smiles, and says, “Angry!”

But at night, we’ve made incremental progress.

Until yesterday, when we started at zero again.  We don’t know why this happens.  We’ve adjusted for all variables…time, temperature, tub toys, washcloth.  I asked him if he’d rather take a shower, and he practically flung himself from the tub to avoid the terrifying shower head.  Tonight, we’ll start all over again.

I wish I could say that there is some magic formula that is going to stop all of this, but I know better.  It is more likely that eventually we will slowly work back into the bath habit, until the next eccentricity comes along.

Siblings

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35567_1445819738044_2510457_nThe profound effect of autism is often felt most acutely by the siblings.  It can be painful see the degree to which even typical children have been transformed by this strange and unpredictable affliction.

Like so many other kids, Evan’s siblings handle our situation with surprising humor, candor, and pragmatism.  They are matter-of-fact in answering questions about their brother and about autism.  But their comments can often reveal that this autism thing is bigger than they are.

One day, about a year or so ago, Ryan had a friend over.  As they were walking from the basement playroom up to Ryan’s room, I heard the friend ask, “So, I forget, why doesn’t your brother talk again?”  Ryan sighed, “Because he has autism.  I’ve told you that, like, a million times.”  The friend pressed further, “But what does that mean?”  and Ryan calmly explained, “It just means he can’t always play and he doesn’t really talk.”  And then, after a pause,  Ryan added “…I have no idea how he’s ever gonna get married, though.”

After I stopped laughing, I had plenty to think about.  That simple conversation told me so much.  First, that Ryan is more practical and matter-of-fact about Evan’s abilities and needs than most adults I know.  But also that Ryan still can’t quite figure out how Evan’s going to fit in to the grownup world that awaits them.  I didn’t chime in, although part of me wanted to assure Ryan that I know plenty of people who would be thrilled to have a spouse who could keep his thoughts to himself.

Elena is equally unimpressed by Evan’s symptoms.  In fact, she seems to think she’s a bit of an autism expert.  One day, when she came home from Kindergarten, I was asking her about her day.  As I often do, I randomly asked about specific kids, mainly to encourage her to consider all of the kids as her friends (and not just the two or three that she always wants to tell me about).  “How’s Susie?”  “Oh, she wasn’t there today; she was sick.”  Oh.  I thought of another kid I noticed when I last volunteered at school.  “How about Billy?  Do you ever play with him?”  She looked thoughtful for a moment.  “Sometimes.  But he has a little bit of autism.”  That one stopped me for a moment.  “Really?  Why do you say that?”  She shrugged, and picked at her sandwich, saying “Well, he kind of makes funny noises sometimes, and does crazy stuff with his hands when the teacher is talking.”

Hmmm.  “You know, honey,” I started cautiously, “There can be lots of reasons a kid would do stuff like that.  I know that you are used to autism, but that’s not the only thing that makes kids act differently.  There are lots of reasons Billy might do that stuff.”  She considered that for a short moment, and then shrugged again.  “Oh.  Okay.  Well, whatever he has, Jimmy has it, too.”

Super.

I have to admit, this story cracks me up.  It is important to remember that there is nothing at all mean-spirited about it.  The remarkable part of this story is how unremarkable an autism diagnosis seems to Elena.  It’s just another thing some kids have.  I realize, however, that to the mothers of her classmates, this story isn’t funny at all (be assured that the kids’ names have been changed).  But autism has been a part of Elena’s life since she was about two months old.  To her, it is totally normal.

This is not to say that it doesn’t cause pain for Elena or Ryan.  When Evan starts to tantrum, and I see Ryan’s entire body recoil and tears spring to his eyes, I realize that the kids have had a lifetime of emotional upheaval.  When Elena said, at around age four, “Why don’t Eban lub me?  Ryan lub me.  Eban don’ lub me” it rocked my world.

So, what do we do?  We have therapists.  We have sibling groups.  We work to involve all of the kids in activities that they can enjoy together, regardless of ability—skiing, sledding, swimming.  We also make sure to give each of the kids time alone with us, and time with typical kids.   And, we worry.  We hope that we are giving them enough tools to process this crazy life they’re growing up in.  We hope that they have enough good stuff in their lives that, 30 years from now, when they look back on their childhoods, whatever PTSD we’ve subjected them to will be outweighed by the happy stuff.  And that they grow up to have a healthy bit of confidence in themselves and a decent amount of compassion for others.