Balancing Life and Autism

Strange Bedfellows

2008-07-31T15:38:00.000-05:00

I've moved...please come see me at.....

2008-06-10T15:00:00.003-05:00

Hi Friends,

I'm keeping all my blogs, pictures, news links and videos in one convenient location. Visit me at www.AutismSpot.com

The great thing about this site is it's FREE, unbiased, and offers hundreds of videos about the things we want to know about. Learn about therapies, diet, biomedical treatments, politics (coming soon), and many other items.

Visit my MySpot page soon, and create your own.

Hope to see you there.

Joey

Hiding Places

2008-06-09T21:58:00.000-05:00

After 5 long years, Mason has learned how to finally play hide and seek. We’ve tried playing this game in the past but there was never any interest on his part. We’d hide, he’d forget to look for us, and because of that, I think Rashele found me sleeping in the closet behind the clothes once.

Now it’s GAME ON every waking moment.

We don’t make the game too hard and we tend to hide in pretty obvious places. If I’m behind the curtains or under the bed I make sure that my feet are sticking out. If behind the door, it’s cracked open just wide enough for him to spy me as he runs thru the room.

When it’s my turn to count he giggles and he does his sprint thru the house, still resembling a cross of a bobblehead doll & 3 legged dog as I’ve mentioned before. I cringe every time he rounds a corner fearful the he's going to run smack thru the sheetrock leaving a Mason shaped hole.

I loudly count to 10.

I begin my hunt, prowling thru the house, inquiring to where Mason may be hiding this time.

As I enter our bedroom I hear more giggles.

“Mason, are you in the closet?”

“Nooooooooooooo” he giggles

“Mason, are you under the bed?”

“Nooooooooooooo” more giggles

“Mason are you in the shower?”

“Nooooooooooooooo” giggly uncontrollably nearing the pee his pants stage.

“Mason, are you in the big bathtub?”

“YES! YOU FOUND ME!”

It’s an easy game to play you see, because he hides in the big bathtub EVERY time, not yet grasping the idea that there are 1000 other cool places to hide, but for now I’m content

The Fear

2008-06-04T15:35:00.001-05:00

Fear - concern or anxiety; solicitude: a fear for someone's safety.

I had the opportunity to be part of something really cool last week. Kent will be sharing more information on that in the next few days.

During that adventure, I was asked what my fears were. More specifically, I was asked what my fears were about having a son with autism.

Where do I start… I thought. There’s an abundance of them, and my fears around that could easily fill my 60G hard drive.

I think the majority of us have some sense of unity in the fears that occupy our mind. I often wonder how things will turn out for Mason long term, and how much control if any, I have over his path in life.

I, like Rashele, am very involved and hands on with Mason every day. So I know that my presence will have some influences on him long term. But that uncertainty, that I’m sure all parents feel, even those with children without special needs, can at many times be completely overwhelming.

As this school year ends, he’s completing his time in our school district’s program for children with disabilities. In the upcoming school year he’ll be entering kindergarten at a new school, and will be mainstreamed part of the day. I fear the adjustment period to the new school, though knowing Mason he’ll take it in stride and will be a non-issue for him. I worry about social situations with his new classmates, as I don’t know how he’ll be accepted into their social circles. Kids smell fear and sometimes I think Mason’s overtly shy personality may be mistaken for aloofness, or a disinterest in friendship. I don’t want that to evolve into him being the victim of bullies or being poked fun at.

Everyday brings a new fear or the rebirth of an old one it seems, be it bullies at school, draining finances, long term relationships, short term friendships.

I sometimes even fear where the bail money will come from if Rashele punches out the next person that gives her a dirty look when Mason has a meltdown in public…remind me to tell you the airport story sometime.

She’s fierce.

I’ll just file these autism fears away and deal with them just like I deal with my Coulrophobia.

I’ll get over it, in time.

Brothers & Sisters Part Deux

2008-05-27T20:55:00.000-05:00

There hasn’t been a day since Mason’s birth that he hasn’t been the most well behaved child in the family. He’s cranky at times, and extremely high maintenance, but almost always easy to get along with.

His older brother and sister could learn a thing or three. Lately, they have been getting along like matches and gasoline. It’s made me identify closely with the Koi fish.

They’ve been known to eat their young.

Animal experts say because the Koi can never pass up a tasty treat. I secretly believe those tiny Koi babies were driving mommy & daddy Koi absolutely bonkers.

I have no doubts I share partial blame for their inability to get along with one another. Kyler shuffles between our home and his father’s home a few nights a week, so finding time to balance with him can be a real challenge. Claire-Marie and her social calendar of playdates, and karate class make it difficult with her as well.

I was at my brother’s house helping him move a couch this evening. Their new Chihuahua started barking (surprising that dog that small can make so much noise). I spied the new bark collar that they had purchased wondering how humane it was.

I was dying to know.

I dared my brother to put it on and administer himself a shock.

He declined and in turned double dog dared me to try. I'm not one of those types that does anything that someone dares me to do, or even double and/or triple dog dares when such a dare is thrown down. But I still had to know.

I was scared.

I held the bark collar up to my throat and barked. (why I chose to actually bark is yet unknown to me… a simple yell would’ve sufficed but I was living in the moment)

It shocked me. Not hard mind you, but it made me think it would cure the shouting matches around here if it got that bad.

More likely, Rashele would fit me with one so I couldn’t raise my voice when Ms. Matches and Mr. Gasoline go at it.

Partners In Crime

2008-05-18T15:07:00.001-05:00

We learned in the last couple of weeks that two couples, both very close to us have decided to go their separate ways ending their long term relationships. One is a divorce, and the other a breakup. (autism isn’t in either relationship)

One caught me off guard, and the other shocked me, but didn’t completely surprise me.

Ironically the news of the splits came just as Rashele and I celebrated our 9th anniversary by sniffing the fumes as we painted Mason’s room, and our study.

No romance

No cards

No presents

Just a simple Happy Anniversary wish to each other and a kiss and we were good.

In the not so recent past the lack of doing anything special would’ve bothered me, I’m the type that likes to make a big deal of special occasions. If we didn’t celebrate it, it was as if the meaning behind the occasion was unimportant, or had little value.

The split-ups made both of sit back and take stock of things and have long talks in bed over the course of a few nights. We recognized that many times we’ve neglected each other’s needs in lieu of meeting our own, or neglected each other to meet Mason’s needs or our other children.

Thankfully, after many attempts to be more conscious of it, we’ve both made improvements. This has taken a long time and while it would be great to fix it in the course of a a couple of days, or weeks, it needs consistency over months, and years.

We never miss an opportunity for a date night.

In the grand scheme of things amidst the chaos that is our life I like knowing that outside of autism, being a father, and such that I matter, and she does too.

The Discovery Channel.....No..The SELF Discovery Channel

2008-05-13T21:35:00.001-05:00

2 years ago when we sat down for one of our first ARD meetings with the school district we went over a laundry list of goals that we wanted to see Mason accomplish for the upcoming school year.

At 3, he still was unable to point out the simplest of body parts, and we were constantly singing Head, Shoulders, Knees & Toes on a daily basis as we, 2 grown adults did our silly dance point to each body part as we sang.

He thought we were idiots.

So part of his goal for last year was to be able to name and point to (yes point…something he didn’t do) to each body part named. Over time he grew into this eagerly pointing to each body part requested, and even pointing to Rashele’s or my nose, ears, eyes, when prompted.

We found happiness in a simple accomplishment.

Two weeks ago a note, that struck me as funny, came home in his school folder, it read something along these lines:

“Mason has been playing with his privates all day, we've had to do a lot of redirecting today"

The weather was nice that day and he was wearing shorts, easy access.

I chuckled and was somewhat embarrassed, but knowing that Mason never did it during the typical timeline that toddlers, specifically boys usually do.

I just chalked it up to being 2 years behind the typical development curve and noticing a new body part.

Judging A Book By It's Cover

2008-05-05T13:33:00.000-05:00

We owed Mason a great birthday this year. The reason being is that last year we made a disastrous trip to Amarillo to visit my wife’s family. All started out well, we arrived mid morning and met Rashele’s family at Amarillo’s answer to outdoor family amusement “Wonderland” (think Disneyworld circa the 1800’s)

We were there no more than 2 hours when Mason, 2 months into having been fully potty trained told us he needed to go potty. Rashele took him to the ladies room as I didn’t trust the suspicious puddles in the men’s room.

Standing just outside I heard a stall door slam (the old fashioned heavy wooden door kind)..I said to myself…please don’t let that be followed by a scream.

It was.

Mason was wailing, and Rashele ran out of the bathroom cussing a blue streak and in tears holding Mason’s bloody hand. His index finger had gotten caught in the door and it was nearly severed.

Long story short, 7 stitches in his finger and all was intact. We cut the trip short and returned back to Dallas.

Fast forward to this year, as I’ve noted in a past blog we have a Disney addiction and we visit regularly (our employ in the travel industry affords us some perks on rare occasion so we use them when we can)

Mason was turning 5 and we wanted to make this a trip that would wipe out last year’s bad memory. We decided that Rashele, Mason, and myself would fly to Orlando and just enjoy the weekend ourselves. So we packed our bags and flew out of town last Friday.

We had a great time enjoying ourselves. Mason really opens up when he’s there and points excessively and talks about the rides and the characters. He even let Piglet hug him and let him get close enough to “assist” him in blowing out the candles on his birthday cake Saturday morning.

We let Mason call the shots most of the day asking what rides he wanted to go on next and so forth. It came time for his favorite, and the one he talks about most, The Dumbo Ride.

We had our disability pass that allows Mason to use the wheelchair entrance, thus alleviating the long line. As Mason waited, a woman whom had observed our entry bypassing the long line asked the following:

“What’s the trick to getting to skip ahead in line?”

I looked at her with utter disbelief.

Trick? I thought.....

My response to her was kind, but in my mind I thought she was a complete knucklehead and obviously her “internal filter” wasn’t applied before she spoke. (I’m glad my internal filter worked that day)

I know looking at Mason from the outside he looks like a typical 5 year old boy. But knowing him from the inside I know his mind and thoughts are often jumbled as are his ability to communicate, run, jump, interact.

Despite the knucklehead woman, it was a great time for the 3 of us to connect and for Rashele and I to focus 100% of our attention on him.

We all enjoyed it.

Takin' a Lickin', But Still Tickin'

2008-04-30T09:09:00.001-05:00

I’m starting a petition, or a Bill, whatever you want to call it.

Forgive me for taking a few days off of blogging. We’ve been breaking more things than we’ve been fixing at work lately and my evening hours have been spent doing work things that I can’t do, or can’t get finished during the normal work day.

I remember when I was younger a day seemed to last forever. Now it seems I wake up, blink a few times, and the day has gone by and sadly, I still have a million things to do.

I was dumbfounded when I realized last week that Mason is closing in on 5 this weekend.

I remember recently that I looked at Kyler, now going on 12 and I wondered how on earth that happened so quickly. When Rashele and I started dating he was 2. We married when he was 3.

Wow. Time flies. I must have had fun somewhere along the way.

Anyhoo... I’ve decided to write my congressman, state representative whomever, and have them extend the day from 24 hours to... I don’t know….maybe 30 hours?

The extra 6 hours would come in handy for those times that I have to call United Health Care asking where my reimbursement check is for the items I submitted nearly 5 months ago. (Matt I feel you pain, I had "go-rounds" with them last week)

Doctor appointments and my paying job would no longer conflict with one another and Rashele wouldn’t always have to carry that burden of shuffling kids to and fro.

Heck, I may even be able to schedule in some exercise. I've been eyeing a marathon training program starting up in June.

And I think I could even fit in an extra hour of sleep to make up for Mason’s nightly sleepwalking and/or sleeptalking sessions.

Of course I haven't yet worked out if the extra 6 hours will set off some sort of orbital chaos, or a tear in the space/time continuum. I need to work out those kinks first.

In the meantime while I do that, can I get someone to second this motion?

Let me know and I’ll get the paperwork submitted, in triplicate, notarized, etc.

NUTS!!!

2008-04-21T22:00:00.001-05:00

A lesson in allergies..

As you may recall a few posts ago I mentioned Mason going thru some testing for all sorts of allergies, food, seasonal, animal etc.

The test provided some crucial data to us and identified some items we long suspected throwing some sort of internal chaos through Mason’s skinny little body.

In addition, we, much like Matt Usey and his assortment of hair care products, (Matt has nice hair) have made an effort to “green” things up around our household. Gone are all household cleaners, cleansers, soaps, detergents and spray bottles.

We figured if we’re going to make an attempt to get his internal processes running smoother by changing external influences, we’d better do it right and get out ANYTHING that might be toxic.

We find ourselves,…(A lot of times when I saw “we” I mean Rashele, something I’m working on) now scouring the ingredients of every item that Mason eats to make sure it’s peanut free, rice free, and egg free. Not an easy task.

Last week Rashele and Mason went to Chick-Fil-A for lunch, one of Mason’s first choices of places to eat. When Mason wants protein, he gets it. I’d grill him up a bacon wrapped filet mignon if he asked.

Later that night, or early the next morning around 2am, Mason as he often does came into our bedroom and whimpering and somewhat demanding to sleep in our bed. Rashele (the lucky one) slept in his bed the remainder of the night, while I was subjected to a whiny, uncomfortable, half asleep, grumpy and kicking 45lb boy. I’m amazed how much room he is capable of taking up on a queen size bed.

I could tell he wasn’t feeling well and something internal was going on.

By accident the following day I found the reason for his inability to sleep that previous night….. Chik-Fil-A. It was during a discussion with a coworker regarding peanut allergies and subject of Chik-Fil-A came up. She told me that they cook their beloved and tasty chicken nuggets in peanut oil.

After consulting their website I confirmed it to be true.

DOH! No wonder he couldn’t sleep.

Training Wheels

2008-04-16T21:04:00.000-05:00

I haven’t completely failed as a father!

With the consumption of time that comes along with Mason’s autism, therapies, and constant need of juggling life priorities Claire-Marie and Kyler have often had to unjustly take a back seat.

They rarely complain.

At the very least 2 years ago, maybe even 3 we bought Claire-Marie her first bicycle a mixture of chrome and bright pink, complete with girly tassels and training wheels.

She quickly mastered whizzing around the neighborhood WITH the training wheels securely fastened the entire time.

I absentmindedly never made removing the training wheels a priority.

She hit a growth spurt and outgrew the bicycle and took to new interests, karate, playing with Kyler and the boys across the street (she’s a tomboy) and growing mealworms and monitoring their progress from mealworm to pupa to beetle.

As last summer and fall came to an end and the weather started turning cooler I realized that I had let a crucial time slip by and she missed out learning to ride without the safety of the training wheels. Her friends were now whizzing by her on two wheels.

We bought her a new bike on Monday and before I removed it from the trunk I resolved that we were going to do this right here, right now.

She donned her helmet.

She psyched herself up and mounted the new bike.

With a wicked determined snarl she said “Let’s Do This!” and started pedaling with me holding her steady and running by her side.

Faster, faster and I was holding on less and less….she was succeeding and she was proud.

She wore it on her face and her entire being.

Now 3 days later she’s unstoppable…..well unless a neighbors trash can gets in the way like it did today…..twice.. Those stopped her pretty effectively.

Mason’s next…..we’re surrounding him with people that love him, completing his therapies religiously and working on building skills that will get him through life. These are his training wheels and one day he’ll be riding on his own.

Money Money Money

2008-04-13T20:37:00.002-05:00

A word from Claire-Marie, age 7.

At my school we raised more than $100.99 for autism research. I liked raising money for autism. In my class we had a large gallon bottle to put silver coins in. We measured 4 inches of nickels, dimes, and quarters.

Another class has 5 inches of nickels, dimes, and quarters, but they cheated because they brought pennies and they weren't supposed to.

But I can't be too upset as it all goes to autism.

Even though we lost the popsicle party.

Single and Looking for Help

2008-04-12T13:33:00.007-05:00

Kudos to all single parents out there I don’t know how you do it.

Rashele left on Thursday to attend the Ladders conference in Boston. I am glad she got the invitation and the opportunity to attend. She is staying with our good friend Judith, who writes an awesome blog titled Autismville for Parents.com

For the past 2 days (seems like 2 weeks) I’ve been juggling working my “real” job at Travelocity, shuttling Mason to his OT and PT appointments, Blogging for Autismspot and getting Kyler and Claire-Marie to playdates, birthday parties and 1 sleepover.

Couple that with a coffee meeting this morning with the Dads of Autismspot (sounds like a beefcake calendar that no one in their right mind would buy) and I’m spent.

And it’s only Saturday.

Rashele’s not due home until lunchtime tomorrow.

So far no agenda for the remainder of the weekend other than killing a couple of hours at the park as we have some great weather this weekend. And it’s some additional free physical therapy for Mason. So while he’s playing, I’m making him work at items we’ve worked on the past couple therapy sessions. We’re still working on more of the balance and stairs that we did last weekend at the arboretum. That will never end.

I’m lucky to have a great partner to share some of the burden.

I promise I will never take her contributions for granted.

I’ll remind the kids of that too as we dine on grilled cheese sandwiches tonight.

Mother Nature's Substitute for Starbucks

2008-04-10T19:19:00.001-05:00

Forget coffee... there’s nothing like getting woken up at 4am with tornado sirens blaring causing me to scramble for clothes in case I’m sucked out and dropped in the streets in my, .. ahem... "delicates". After 24 years in the North Texas area I’ve become accustomed to hearing them this time of year, and while I’ve never actually seen a tornado, I don’t brush them off.

Last night was not a drill. We turned on the news and saw that there was circulation in our area. For you non Tornado Alley folks that's fancy weather talk for ominous clouds spawning tornadoes to unleash unholy hell on the landscape.

We scooped up the kids made our way to the center of the house in the kids’ bathroom, candles, flashlight, weather radio in hand, along with a couple of blankets and if needed the closest mattress in case we have to hide the bathtub while we wait to see if the equivalent of a freight train rattles through our house.

We’ve been through this a million times, twice in the past 2 weeks. But last week it occurred at 4 in the afternoon. Nighttime is an entirely different ballgame, you can't see it coming.

Thankfully it was only circulation, and much like Michael Vick’s football season last year, no touchdowns.

We were all back in bed 15 minutes later.

Mason of course was oblivious as to why Claire-Marie was crying (she’s deathly afraid of tornados and tends to panic) and why on earth we disturbed his slumber, forgetting that he was trying to climb in our bed only an hour before.

He’s not at the point that he’s going to understand the chaos that April and May bring to North Texas, not for a few more years I suspect.

I’m eager to hear how some of our other Autismspotters fared. I know after the rumbling storms shook us out of our beds, they quickly meandered in the general direction of Kent’s, Matt’s, and Jay’s cities.

It’s Mother Nature’s substitute for Starbucks

Baby Steps On A Typically Perfect Day

2008-04-06T20:40:00.004-05:00

We’ve been waiting for spring to arrive. The last few weeks have been rainy, and while not cold, it’s not yet been ‘shorts’ weather.

Today was the day.

We elected to take advantage of the perfect 76 degrees this morning and headed to the Dallas Blooms exhibit at the Dallas Arboretum..

The weather was begging us to be outside and there is nothing Mason loves more, save Disneyworld, than poking his nose into flowers and feeling the textures of different plants and such.

Plus all the running streams, waterfalls, and pond with their giant multi colored fish will entertain him endlessly.

We entered into the Arboretum to an explosion of color. Reds, Blues, Purples and every other color imaginable dotted the landscape. Mason immediately leaped out of the stroller and accosted a handful of pinkish tulips, bending down to sniff them.

“Pink flowers”, he chimed.

He got his exercise in today. The acreage is landscaped perfectly with winding paths, rose gardens, acres of azaleas, japanese maple trees, and a wonderful collection of stone steps throughout the park. It’s a physical therapist’s dream come true.

It was a perfect opportunity to get in some free physical therapy. Mason needs to increase his leg strength and stamina, at the same time, increasing balance along the way.

His gross motor skills are in constant need of a tune-up and stairs have always presented a challenge.

Mason first learned to walk upstairs in typical child fashion, one step at a time, both feet always planted on the same step. He did this for MONTHS while other younger children passed him by.

After much therapy he then progressed walking upstairs with one foot on step alternating between steps.

Navigating down the stairs has always presented a challenge to him. Only 4 months ago, give or take a month, did he dare to walk downstairs one foot on each step, with hand firmly grasping a handrail or locked in a virtual death grip on mom & dad.

Now however we’re concentrating on navigating down stairs without the need of utilizing a handrail or a parent for balance, but instead to rely on his own strength and balance.

We’re making baby steps….pun intended.

The Arboretum today was a perfect backdrop to watching how much progress Mason has made physically in the past couple of years.

Don’t get me wrong, he still runs like a cross between a bobblehead doll, a 3 legged dog and a marionette as I’ve said before, but he’s working hard, enjoying himself, and proving to everyone around him that he is not a quitter.

A Shot of Hope

2008-04-03T11:04:00.003-05:00

In the months following November 2005 I was in a very dark place, looking back I see that now. Mason had just recently been diagnosed and internally I was not processing it well. The worst thing about it is that I didn’t share any of what I was feeling with my wife. I was too busy trying to make heads or tails of it to ever be able to communicate effectively about it. That was a huge mistake, even if it wasn’t effective, I should’ve communicated, albeit badly, what I was feeling.

I didn’t know what to expect with my only flesh and blood son and this thing called Autism that had been thrust at me.

Rashele and I were stressed. We were at a loss where to begin treatment and we were fighting a whole lot more than we used to.

Hope wasn’t on the horizon.

There are places in time in our lives where most of us can remember what we were doing when a monumental event took place.

Here are some of mine, a mix of good and bad

• March 17th 1997 – I met Rashele for the first time. She was wearing a red dress, though she swears it was green because it was St. Patrick’s Day. I’m probably wrong. Her beauty obviously tripped me up that day.

• September 2002 – Standing in our bedroom when Rashele exited our master bath, beaming with a BIG smile that lights up the room, pregnancy test in hand. She told me she was pregnant (with Mason). I was completely blissful and unaware of the challenges ahead of us.

• 9/11 – In the office troubleshooting our network when I was bombarded by calls from my wife, and coworkers about the planes hitting the World Trade Center. We sat transfixed watching news coverage for the days following

• The assassination attempt on the late President Ronald Reagan – I was standing outside my 6th grade 3rd period Woodshop class.

• Mason’s diagnosis of Autism – I remember staring out the window on the car ride home, tears almost streaming down my cheeks (more on that later) and wonder what the hell just hit us.

Most importantly, this one:

• “Autistic Boy Hits Six 3 Pointers”

It was Tuesday February 21st 2006, sometime around lunchtime. In between testing our internet product and waiting for the results I decided to check the goings on in the world and hit CNN.com

I read the headline again “Autistic Boy Hits Six 3 Pointers”

Now I have to back up. There are 2 things you must know about me.

1. I am a DIE HARD basketball fan. There was a time growing up that I played EVERYDAY much to the detriment of my educational career, homework was always secondary. To this day, if I need time to clear my head nothing does it for me like shooting hoops. Though I do it far less now than ever.

2. I never cry. I teared up when my kids were born, but I was all smiles. Relatives have passed on from this earth and again, while very sad, no tears. Rashele calls me emotionally dead inside. A robot.

I read the headline again, soaking it in….did I read that right?

I clicked the link….there was video.

I, like much of the world that day, was introduced to Jason Mcelwain and saw his astounding accomplishment that unfolded on February 17th 2006.

I watched him sink shot after shot, and listened to the story surrounding what led up to that great event.

The video ended and I sat at my desk in full view of coworkers and had tears streaming down my cheeks for the first time that I could remember in a very very long time.

This hit me straight in my heart.

It was a 4 minute, 19 second dose of hope for me, and it was badly needed. And it changed my complete outlook on autism and my son.

I watched every bit of coverage in the weeks following and cried every time I saw it. And I still do. I even did this morning.

I came up with a new mantra from that entire event… “If Jason Can, Mason Can”. (I even considered getting that tattooed at one point)

A few weeks ago I had some time to kill on my lunch hour and stopped by a local bookstore. I browsed the Special Needs section as I usually do and saw a new book:

“The Game of My Life, A True Story of Challenge, Triumph, and Growing Up Autistic” by Jason “J-Mac” McElwain.

I plopped right down there in a comfy Barnes & Noble chair and read a few chapters, again more tears streaming in public. This isn’t good for my image I thought to myself. People are going to think I’m soft.

Since then I’ve read it during Claire’s karate class (more tears), at home (more tears) and I even snuck it in church and read it. (more tears).

Jason eloquently talks about his childhood, his parents and brother, his friends, his fame, and basketball

Jason’s story is exactly what I needed to hear on February 21st 2006, and a million times since. Rarely does a week go by that I don’t watch the video again and again and again, even today 2 years later.

Go get the book and please tell me you cried like me, it will make me feel better.

And again, take a minute to watch the story and soak up how great this truly is.

I Hear The Secrets That You Keep, When You're Talking In Your Sleep

2008-03-31T20:38:00.000-05:00

When you close your eyes And go to sleep
And it's down to the soundOf a heartbeat
I can hear the things That you're dreamin' about
When you open up your heartAnd the truth comes out

Romantics fans rejoice!... yeah I discovered my love for music in the 80’s. I still remember the music video.

Mason, Rashele and I have both noticed, has had an explosion of language these past few weeks. He’s becoming less echolalic and more expressive in communicating his needs and feelings.

I’m sad

I’m angry

I want to play Super Mario Galaxy

I want 20 Oreos please

These are all phrases we hear multiple times a day and we love it. It’s the progress we’ve been patiently waiting for, for a very long time.

He talks 24 hours a day. Even when sleeping.

As I’ve probably mentioned before, Mason has never been a “good” sleeper. He’s had some serious issues since birth, and along with him, Rashele and I have paid the price. He was regularly congested during the afternoon/evening hours and his breathing, specifically through his nose was negatively affected. And because of sensory issues he refuses to pick his own nose, so we get to go digging for gold for him. ( I will praise him on the day he pulls out a big boogar on his own, it’s gross I know, but true.) None of us have slept an entire night, save the rare occasion, for nearly 5 years.

Since our allergist visit a few weeks ago, and being prescribed Allegra, and Nasonex, he’s been sleeping much sounder and breathing much better throughout the night.

While he’s still not sleeping 100% through the night, it’s the closest we’ve been in a very long time.

He’s still “active” at night and talks quite a bit; we can hear him late at night and early into the morning hours, completely asleep, but actively talking through his dreams. Often talking about Mario, or being tickled by his brother and sister, or going to his Aunt Dasha’s house. Other times a defiant NO! or cry as he navigates his way through a bad dream.

Day or Night, we’re thankful for what speech we have and hope to build on it.

TGIF

2008-03-27T20:57:00.002-05:00

Thank God It’s Almost Friday

If there’s one thing I’ve learned about working in the corporate environment and going on vacation, it’s that the week after you get back from vacation warrants thoughts of stress, despair, and never wanting to go on another vacation again.

I had 600+ emails in my Inbox, greeting me, (more like mocking me) as I booted up my laptop on Monday.

I am notoriously bad about checking my inbox on weekends, vacations, during church etc. I usually have to do so in secret so as to not catch the evil eye of my wife. I don’t know why I do it, it’s not as if I’m so high on the corporate food chain that it’s a necessity. I just like keeping on top of it to keep it under control I guess.

I’ve been looking forward to this weekend for a number of reasons.

I’m on call so that means carrying around a pager 24 hours a day. It often feels like carrying around a cocked, loaded gun. And I fear it going off at 3am. I’m rarely coherent at that hour so being woken up to someone’s corporate emergency usually is a start of a bad day
Saturday and Sundays are my preferred days of the week.
Sleeping in, if you consider 7am sleeping in. Mason rarely goes past 7.
Most importantly – it’s DATE NIGHT on Friday night!!

Rashele and I, like most parents of autistic children don’t have oodles of time to spend together anymore. Prior to having Claire-Marie and Mason, and on weekends when Kyler was at his father’s, weekends were often filled with things that WE wanted to do; road trips to Austin or San Antonio, movies, both eating a HOT meal simultaneously while enjoying adult conversation.

Since the birth of our children they’re now filled with errands, grocery shopping, birthday parties, karate lessons and various goings on.

Date nights help us a lot, and we try to do our best to go on at least 1 date, hopefully 2 dates a month. I noticed on many occasions when we’ve not had those small windows of time to focus our attention on one another, we oft start getting grouchy with one another, many times over stupid things (like this morning)
We get that chance to reconnect with one another, remember that we’re a couple very much in love.

That foundation is noticeable to our kids. And I believe Mason, in his chaotic, turbocharged little mind even picks up on that.

Autism Has No Borders

2008-03-23T09:22:00.000-05:00

Last week while in Brussels, we had the pleasure of staying 2 nights at the home of Robert (Rashele's Godfather) and his lovely girlfriend Danielle.

They are two wonderfully giving people and they showed us a great time last week.

Robert is a member of the Rotary Club in Brussels. The cause that they've adopted as a chapter is to raise autism awareness. I don't know how or why they chose that, or if it even had anything to do with Mason. We appreciate their efforts as Autism as we all know is not a problem local to only the U.S.

While staying with them, Robert invited a member of their Rotary Club over for dinner last Monday evening. Her name is Maryline, and she is the only female member of the chapter and got involved after learning that the chapter was choosing autism as their cause.

She joined them because her 11 year old son Sebastian was diagnosed with autism at age 4. She is a Research Psychologist for School & Family Orientation.

We spoke at length about both of our children, and I was awestruck at the similarities in our stories, at the things our children did, and at the difficulty in getting an autism diagnosis, and at the struggles we continue to have today. She like many here in the U.S. had her concerns completely dismissed by her son's doctor, but she continued on until she got the diagnosis that she knew was correct.

A mother's intuition is universal.

Rashele and I learned that services in Belgium and even throughout Europe in general are much harder to come by than here in the United States. Because of socialized medicine it is very difficult to find therapists specializing in speech, occupational therapy, etc. And as recently as 3 years ago, ANYONE could call themselves a therapist without the need of any type of certification. Thankfully that has changed.

Maryline asked a lot of questions about our therapist here, and our education system in general. She was very curious to understand how our system worked and how theirs could be improved. She feels as if Belgium is today, where the United States was 20 years ago in dealing with autism.

There is a great need for change, WORLDWIDE.

We loved meeting her and talking in length about autism, autismspot.com, and what our everyday lives are like.

The Golden Trophy

2008-03-21T06:23:00.002-05:00

We're Home!

You may be wondering why on earth I am blogging at such an early hour. None of us slept past 4am, we're still very much on Europe time. Mason's body clock was most affected. He came bounding into our bedroom at 3am

We awoke early and left Paris yesterday morning at 9:55am Paris time, (3:55am US CST) and arrived into DFW airport at 230pm CST. Flight time took 9hrs 54mins and 23 seconds.

Mason stayed awake the entire time and was happy as a clam the entire flight, playing downloaded games quietly (most of the time) on Rashele's laptop.

This will be a long entry as I'll try to encapsilate most of the highlights of the trip (you already read the lowlights)

Prior to leaving, we were very preoccupied with how Mason would adjust to a number of things.

1 - Unknown surroundings. He's never been to his Great Grandmother's home before

2 - New relatives, he's only met Rashele's Godfather and his girlfriend when they visited last November

3 - French

4 - Food

5 - Plane ride

6 - Culture

7 - Bathrooms

8 - Time change

9 - Sleeping

10 - Weather

We've observed that when Mason's stress level rises that some areas, especially food and sleep suffer for it. And with the 6 hour time change we knew we'd have an uphill battle.

1 - Unknown surroundings - I think we sometimes lack giving Mason credit. In the early and not so early days entering a new place would trigger hellacious tantrums, but now I think he appreciates the adventure newness brings. He readily explored his Great Grandmother's house, and stairs, and elevators. He made himself right at home.

2 - New Relatives - This is probably what concerned us most. Mason's never been big on giving hugs and kisses to complete strangers and of course this is customary when greeting family members and close friends in Europe. The first couple of days were a bit iffy, but one moment made me extremely proud of him. Saturday we were in the city center doing some shopping with BonMama (Great Grandmother) and Mason asked to use the pottie. Since we were unfamiliar w/the area, BonMama, in her broken english told to come with her and she'd show me the way. After he was done with his business we got back in the elevator to meet up w/Rashele and the kids. The 3 of us were alone in the elevator and tiny BonMama, all of 4' 8", spoke her sweet french to Mason and reached out to him. He looked up at her and latched on to her giving her a long extended hug up 3 floors until we got off. I could tell that made a HUGE impact with her and was probably the hightlight of our visit with her.

3 - French - I think I struggled more than Mason. The great thing about Europe is that a lot of people speak English. The good thing about Rashele's family is that Rashele speaks some french, and some of the others speak English so we had a good balance and Mason got to interact with others besides his immediate family members

4 - Food - We brought along plenty of substitutes with us that we KNEW he would eat in a pinch, but we did manage to find some items there that he tried and liked. A couple of stops at McDonalds while we were there helped as well. He loves his chicken nuggets. (I thought McDonald's there tasted a LOT better than the stuff here)

5 - Plane Ride - The ride coming home was EASY. The ride going over was a bit more of a challenge. We left DFW and flew to JFK for a 3 hour layover before catching JFK - Paris. I think we made the mistake of giving Mason a dose of Benadryl too early as he fell asleep as we were taking off and slept for 2 hours. That left 4 hours to go and he was tired and never could get comfortable enough to sleep again. With about 2 hours to go he started to meltdown and I had to hold him and walk around the cabin for about 30 mins telling him it would be okay. Thankfully he wasn't crying, only stressfullly whining to me in my ear. With about an hour to go on the flight I did manage to get back in our seats with him stroking his back and putting him to sleep until we landed.

6 - Culture - No issues here

7 - Bathrooms - If a bathroom appears to be too "different" from another Mason won't go. And forget peeing outside, it doesn't matter how bad he has to go, if there's no toilet he'll hold it until he can't hold it anymore. This is when the occasional accident occurs.

8 - Time Change - Had some effect in the beginning, but coming home has the less desireable affect. I'm hoping we can get him down for a nap sometime today to get him back on a schedule. I knew when he fell asleep at 6pm last night on the couch that we'd have an early morning wake up call. I didn't imagine 3am though.

9 - Sleeping - Overall he slept great on the trip, we even had a couple of nights where he slept the entire night. That RARELY happens. I think he slept better than most of us.

10 - Weather - As I hinted in my previous entry about the vomit/urine debaucle, weather can have a tendancy to stress him out. It's very sensory for him. He doesn't like or understand the rain drops hitting his face. When we coupled the rain, and cold + the new surroundings of the donkey farm + the stress of the car incident +, is when we had our only big meltdown.

We made time in Paris to visit the Eiffel Tower because we wanted Mason to see it in person. It was COLD so we stayed only long enough to get pictures, then we went back to the hotel to warm up. It was just unbearable.

I'm already looking forward to the next trip, but am glad that it's at least 2 years away. And next time we'll go during the Spring or Summer.

When we were deboarding the plane yesterday we struck up a conversation with the woman sitting in front of Mason. She thought we were brave for traveling with 3 kids, one of which has special needs all the way to Europe.

I thought we must be stupid.

Now I think it was a little mix of both.

I'll explain why I titled this "The Golden Trophy". Mason, when challenged with something be it a new food, a ride at Disneyland Paris, or something that takes him out of his comfort zone will excitedly repeat this phrase "YOU DID IT!! YOU WON THE GOLDEN TROPHY!!"

And on this trip, he did just that.

(I know I promised to blog about the wonderful mother we met in Belgium on Monday night.. I still plan on doing that and hope to have it blogged by tomorrow at the latest)

Enjoy your days everyone!

;o)

Beasts of Burden and the Kindness of Strangers

2008-03-17T17:48:00.002-05:00

Forgive me for not blogging sooner. I've not learned to conquer the intracacies of the european keyboard. The W, A, M, and other keys are all in different places and it proved to be too much for me to overcome. I was spending more time making corrections than actually blogging and eventually gave up.

Thankfully we brought Rashele's laptop along for Mason and I've got a WiFi that I'm working off of to publish this blog.

Yesterday (Sunday) proved to be a trying day. I should've known it was due to be ugly when I woke up at 2am and stared at the ceiling until 6am, falling back asleep until 830am.

We gave the kids some more time to sleep in while we discussed the day's agenda. We were to meet Rashele's cousin and Godfather in the Belgian countryside for a visit to a farm. That was all I knew.

I awoke my daughter Claire-Marie and my son Kyler and did my best to get them psyched for the adventure to come.

I was greeted by my daughter saying "Daddy I don't feel so good."

I comforted her as best I could and got our typical european breakfast of fresh fruit and bread prepared for everyone.

As we got the kids dressed, Claire-Marie repeated to me "Daddy I don't feel so good" with her sprinting in the direction of the bathroom.

She ALMOST made it.

She threw up everywhere.

I had immediate flashbacks to our last trip to Europe where we all came down with a bad stomach virus. I thought we were all doomed.

After getting her cleaned up, she said she felt remarkably better.

I was not convinced but had little control over the agenda for the day so we thought we'd make the best of it. Her color had not quite returned to normal and she wasn't her typical "Claire-Marie" self, often exhuberant and bouncing off the walls at all times.

We packed out things for the day and made our way out the door. Amidst the chaos of greeting family members and all splitting up into cars for our trek to the countryside, we forgot one of the most basic fundamentals of traveling with Mason.

Take him to the bathroom.

We weren't in the car for more than 10 minutes before Mason said " need to go pottie "

@#$@^@$%@%^

Understand the conveniences of public restrooms aren't quite the same here in Europe. You can't just stop and hop into a McDonald's to use a urinal ad hoc. Every bathroom visit here costs a few coins. The kids think thats funny.

Anyway.. Back to Mason having to go potty. We couldn't stop because we were following Rashele's Godfather, and he was speeding ahead of us and our attempts to ring his mobile phone failed.

So we figured we'd have to ad lib.

Good news!!! I found a plastic grocery bag in the car! Satisfied at my inginuity I unbuckled Mason and he stood up, we dropped his drawers and managed with precise aim to do his business in the bag without spilling a drop.

Then came the bad news.

The bag was not watertight, or in the case, urine tight and Mason barefoot because he refuses to wear shoes and socks in the car now had a urine soaked pair of shoes/socks sitting on the floor.

More @#%!#@$^T@$%@^

Then came Claire-Marie again, "Daddy I don't feel so good"

I saw her breakfast of strawberries in reverse.

She missed the plastic bag she was carrying in her lap (not the same on Mason peed in)

Mason looked at Claire-Marie as if she was from another planet, and was doing all he could to distance himself from her, but amazingly was acting like a typical disgusted brother would.

We arrived at our destination, a donkey farm in rural Belgium. Robert, Rashele's Godfather quickly learned of our adventurous commute and did his best to help, summoning the owners of the farm.

These kind strangers immediately shuffled Claire-Marie and I into their home and allowed me to wash her up, and provided her with a clean change of clothing.

Once done, I met the rest of the family at the back of the farmhouse where their display of their work was demonstrated. These wonderful people teach people of all ages how to do various farm activities, but they were recently featured on a Belgian news station for their work with Autistic children. They regularly see a range of children, and provide various means of therapy to them. Allowing the children to work with the animals. They provide a great service to our children in a region of the world that is short of such resources.

Mason unfortunately is very affected by the weather and in typical Belgian fashion, yesterday was cold and rainy. This makes him very uncomfortable and his stress level, now riding high made it impossible for him to participate. He opted to observe from another room.

While Rashele and I were both contemplating turning around and heading home for the day after the urine/vomit debaucle, we are glad we continued on with the day. They made us forget about the lowlight of our trip by replacing it with a hightlight.

They offered us their shelter, their clothing, and some really, really awesome food.

And even though Mason was a bit stressed at the beginning, he adjusted well and by the end of the day was freely approaching the donkeys on his own and interacting.

It's 11:45pm here. I've got to get to bed as we drive back to Paris in the morning. More stories to tell which I'll hopefully get to tomorrow night. Met a wonderful woman tonight with an 11 year old son with autism.

More on that later.

Happy Birthday To Me

2008-03-12T15:43:00.008-05:00

I woke up yesterday morning, and remembered it was my birthday.

Sigh.

39.

Dude, (I often call myself dude when talking to myself) you're getting old and I swear I heard my hip creak when I got out of bed.

The kids went off to school forgetting it was my birthday and Rashele was too stressed about our upcoming trip to remember right away that morning.

Which truly is not a big deal, to me it's just another day. Even I had forgotten about my birthday in the days leading up to yesterday.

A million things needed to be done before we left town, and I'm ashamed that Rashele was hurriedly accomplishing most of them without me.

I let her carry way to much of the load planning this trip and getting things done.

So my birthday was the last thing on my mind, but Rashele and I did manage to sneak away for a very nice lunch, and a fat peice of bread pudding while the kids were all in school.

Upon arriving home from school Kyler and Claire-Marie both wished me a Happy Birthday when they blew through the door. (I think Rashele reminded them in the car)

We agreed no gifts this year as with the Paris/Brussels trip looming, finances would be tight, though I was secretly hoping that the kids would hand me a brightly wrapped iPhone :O)

But I got something far more valuable. Mason, my semi verbal son, who when he wants to, reminds us that he's acutely aware of his ability to speak when needed, did the following:

Apples to Oranges. A Comparison

2008-03-09T20:36:00.000-05:00

We spent part of the afternoon at my younger brother's house yesterday afternoon. My nephew Thomas was celebrating his 5th birthday. He is almost exactly 2 months older than Mason. He's such a funny kid, very animated, excitable, friendly, and mischievous as any boy his age should be.

It's days like yesterday where I compare Thomas and Mason side by side, and NOT interacting with one another (because Mason refuses) that I’m reminded how dreadfully far behind, and different Mason is from other kids.

I'll admit, it got me a little down and irritable yesterday. But I’m an optimist by nature so I bounced back quickly.

It's not as bad as the early days, some progress has been made. He'll now play in the vicinity of his cousins, even within a few inches of them, and even sat in with them whilst Thomas opened his presents. In the pictures that were taken, I'm sure you could hardly tell that he was any different from any of the kids there.

Yesterday did have some high points. He said hello to almost everyone, kids and adults, looking them in the eye as he greeted them. Even gave some “half” hugs to his aunts, uncles, and grandparents. Not the cousins though, he’s always related better to adults than kids anywhere near his own age.

I do feel bad that Mason has never had a traditional birthday party of his own. We’re hoping that this year will be better than past attempts a having party. This past Christmas he took a newfound interest in opening presents, and even yesterday I had to tear him away from opening all of his cousins.

Typical behavior…Yeah…now that’s more like it

Hold The Eggs Please

2008-03-07T18:20:00.000-06:00

Rashele and I elected to delve further into the depths of Mason’s suspected allergies. I say suspected because we became leery of the IgG results after reading more in depth some discouraging facts about the test and the inaccuracies that tend to occur with it. We consulted with an allergist who confirmed that the IgG is the least accurate in determining allergies for a variety of reasons. This is in part because the results are only as good as the lab doing the testing.

So we elected for a “back scratch” test and weigh the differences between it, and the IgG test.

As with all things revolving around Mason, this took careful planning. He hates anyone in a lab coat or scrubs. To counter his disdain for the medical staff, we took some of his favorite objects with us.

• 1 Dozen Donut Holes
• Laptop with downloaded episodes of his favorite shows.

We arrived promptly and checked in for our appointment. Fortunately their waiting room doesn’t give off that “doctor” feel, so at the time Mason was partly clueless what was about to befall him. We did prep him earlier that morning, and again in the car about what was going to happen, but we never know how much is going to sink in.

Our names were called and we made our way to the room.

Defenses were drawn. Mason knew the jig was up. Heels dug in.

Out came a donut hole. Like a donkey with a carrot dangling in front of him, he followed us into the room.

We proceeded to set up camp, booting up laptops to show his favorite movie as a detractor/motivator while the nurse came in to take vitals and gather other pertinent data.

In came the doctor, she spoke very kindly to Mason, took some more vitals. He, as usual, wanted nothing to do with her.

It was that time. The shirt had to come off, and the testing was to begin. Out came the Sharpie marker. Rashele and I assumed our positions, she holds down his top half, while I hold the kicking legs. As they were administering the markings I mentally credited Mason for being freakishly strong for all 43 pounds that he is.

Next in came the nurse to administer the pricks to the back. This was the hard part. 30+ pricks from shoulder to shoulder, and practically down to his waist. We all endured the screaming banshee that is my son. It was uncomfortable for all of us, especially Rashele, but moreso Mason for obvious reasons.

After a couple of minutes the markings were done and the nurses left us alone in the room for 20 minutes while Mason percolated. I say ‘percolated’ because for the next 20 minutes we watched his shirtless back bubble with obvious allergic reactions to various items.

Now with Mason, whenever a particular body part is hurt, he will mentally check out and ignore that body part. His mentality is out of sight, out of mind so to speak. I’m sure his back itched terribly but he wouldn’t scratch it. He sat straight up in a tense position until the time passed.

There was no doubt that he was having some severe reactions to something. We were anxious for the staff to come back, we were partly excited, partly scared.

Eventually they came back in and compared the red, inflamed, and I imagine very itchy markings on Mason’s back. Some allergies were moderate, like wheat, and cats, (which we have 3) some allergies severe, like Egg, Rice, and Peanut.

None of these ever raised a flag on the IgG test, yet there was no debunking this test as I could see with my own eyes that red bubbled skin. Definitely allergic.

Mason’s never eaten eggs, and we were told that items cooked with eggs were still probably okay for him to consume as the egg proteins cook out. And he has only had peanut butter in very small doses, and we saw no “outward” reactions, but I’m betting internally it was affecting him unbeknownst to us.

As for rice, it dawned us yesterday that we can attribute Mason’s incredible crankiness for the past month to the fact that we put him on Rice milk just a few weeks ago. (at the urging of the nutritionist that urged us to pull dairy from him…no dairy allergies were found in her IgG test or the back scratch test)

For the severe allergies we were administered a prescription for an Epipen just in case one was ever needed for a severe allergic reaction.

Looks like some menu changes will be happening very soon.

A Social Study

2008-02-28T20:25:00.001-06:00

We had some shopping to do. We’ll be heading overseas in a few weeks to visit Rashele’s family in Belgium. She was asked by a family member to bring over an Apple iPhone as they’re not yet available there. So a trip to the mall and The Apple Store was called for.

In order to resist temptation and replace my dysfunctional iPod with an iPhone for myself, I elected to leave the Apple store to Rashele.

We were hurried last night since we wanted to be home in time to see Larry King Live and the show on Autism that was being done. (I loved it) I had neglected to set the DVR before we left the house so making it back by 8 was a priority.

While Rashele was doing her thing at Apple, Mason, Claire-Marie and I went to the play area. We frequent the malls a lot as Mason loves to climb on all the structures. This one is one of the best in the area.

This particular mall caters to 5% of the population it seems. It’s filled with very high end stores, which means in today’s economy the mall is almost empty every time we visit. I still don’t understand how it manages to stay in business.

They play area is a big and wide open assortment of giant foods to climb. There’s the big plate of Steak and Eggs, with Bacon. There’s a large oversized Grapefruit, along with a Fork and Spoon Slide.

All the structures are bright and colorful and tempting for any kid.

Since the mall is rarely populated, the play area usually contains a dozen kids at most and tonight was no exception.

I watched Mason climb over all the structures time and time again, never really having any physical detriments standing in his way. His movements are very well thought out and precise, though lacking in great strength and quickness.

While running however he resembles a cross between a bobblehead doll and a marionette. He doesn’t seem to know how to control all those moving parts at once.

Over the course of our time there I’d see an occasional child approach Mason asking him to play. He’d look them in the eye, mumble something, and turn the other way, ignoring them and going about his business.

On one occasion after being approached by a potential playmate, he ran to me. I asked him he wanted to play with the other kids.

Noooooooooooooooooooooo, he sang back to me in a whispy, high tone.

I asked him if he was afraid.

“Noooo?” with a fluxed pitch.

He almost seemed be questioning me if he was scared. I told him it was okay if he wanted to play with the boys and girls, that they were his friends.

An adamant NO was shot back to me.

He went back about his business of conquering the large plate of steak and eggs.

A set of parents sat a few feet away from me. The father interacted with his son, 2 or 3 years of age, verbally prompting him to stand on various parts of the playground. The Eggs, the Spoon, the Grapefruit, and the son giggled as he complied with each command.

The father beamed.

Show off, I thought to myself, my son can count to 10 in 4 languages, 3 that we didn’t even teach him..

Truthfully I was a bit jealous of the ease the father had getting his son to complete these simple tasks.

Along with the lack of social skills demonstrated this evening, the inability to follow the simplest of commands was one of the other red flags we picked up on early in Mason’s lifetime.. Thankfully some progress in the right direction since then has been made, but, I always want more.

In quiet observance from my comfortable seat in the corner, I scanned the now surprisingly growing crowd of children at the play area to see if I could pick up any other kids struggling with ASD. Every now and again I can spot one but tonight it was just mine.

Wii Are Family

2008-02-18T21:57:00.001-06:00

We scored the most coveted Christmas present this year. We tried for months last year to get a Wii and we were never in the right place at the right time. Our resolution was to have friends call us if they ever saw one in stock somewhere. As luck would have it, one night last October one of Rashele’s friends spotted a fresh shipment of Wii’s at a Target across town. He called us, bought it for us, and we promptly paid him the following day.

And it sat in our closet until Christmas. It was the longest 60+ days of my life. I do not consider myself a “gamer” but I do enjoy some down time playing when I can afford the extra time.

Mason LIVES for the Wii, but he doesn’t play it. He just enjoys watching all of us play. I’ve tried to teach him the intricacies of pushing the buttons in the proper order, but it’s a bit of a challenge for him.

Thus far it has been a tremendous family gift. We play it daily once house business is taken care of, and our two older children, Kyler and Claire-Marie enjoy some mild trash talking to Rashele and I when we all compete head to head.

It’s been great family bonding time. But the greatest moment of us having it occurred last week.

I was at the kitchen table, pounding away on my laptop. Rashele was in the living room folding laundry.

Kyler and Claire-Marie were sitting on the couch nearby watching TV.

Mason walked into the room, straight up to Kyler, looked him directly in the eye and said “Kyler, will you play Super Mario Galaxy please?”

We were floored.

Completely unsolicited speech.

From time to time we see these flashes of typical behavior and they’re always a welcome break from the norm.

Priceless.

You've Got A Friend In Me

2008-02-15T19:37:00.009-06:00

Autism has helped me have more appreciation in the value of a good friendship.

Growing up, we moved around a few times so I never truly felt rooted in school and thus I wasn’t a ‘popular’ kid. I tended to hover on the outer fringe of many social circles.

Throughout my teenage years many friends came and went. Some friendships were good, others bad, though I certainly didn’t see it at the time.

Thankfully the bad friendships naturally weeded themselves out. Some good friendships changed when life events eventually got in the way. Many times I think about those good friends that I lost contact with and I often want to pick up the phone and see how their lives turned out. Subconsciously, I think I want to see if any of them are affected by autism as well.

Over the past few years I’ve had the opportunity to meet hundreds of people affected either directly or indirectly by autism. I find it easy to bond with them.

We’ve become fast friends with many. And my wife and I have relied heavily on many in our support groups for advice, sharing successes, failures, and the occasional rant.

I liken it to dating. But it’s like jumping ahead 15 dates into a relationship, there’s a certain “understanding” that’s been formulated. I personally tend to have a bit more respect for them than I would for a total stranger in which I hold nothing in common; for I know what their daily struggles are like.

There is the history with them that is all too familiar, financial difficulties, strained marriages, constant worry and fear, all of us wanting nothing short of the best for our child.

They’ve been a great comfort.

As far as Mason goes, I often wonder if he will ever establish any lasting friendships in his lifetime. He has no friends to speak of, and he’s either blissfully unaware of that fact, or completely content with it.

He’s not currently bothered with it either way.

It’s my hope that he’ll one day be able to build some good friendships and place value and trust in them, and that he’ll carry these throughout his life.

There’s something very comforting about having good friends that have your back.

It makes you feel rooted, able to weather any storm.

Such as Autism.

Odd Talents

2008-02-09T21:28:00.001-06:00

Everyone in our family has some sort of quirky talent.

I for example have an inane ability to name any movie I’ve seen since the age of 8 and tell you the name and/or location of the movie theatre I saw it in AND whom I saw it with. I know…completely useless. I also have the ability to think of a random feature film, and within 7 days, said feature film will air on TBS and/or TNT.

Rashele has an uncanny ability to read my mind. Within seconds of me thinking even the most remote, random thought Rashele will ask me something on that very subject. She truly creeps me out sometimes and I’m convinced that somehow she’s implanted some unknown alien mind-reading technology in my brain while I slept.

Kyler can flip his tongue upside down, both to the left, and to the right. I’ve been told only 1 in 1000 can do it.

Claire-Marie has the weird eyebrow arching thing she does, and she can belch louder than any 7 year old girl should. Crazy.

Mason however has the oddest, yet most amazing talent. Claire-Marie named it perfectly over the past Christmas holidays. While riding in the car with my brother and his wife she commented to them.... "You know those digital things that you can have in your car that tell you which way to drive?"

My brother replied, "You mean a GPS?"

"Yes", Claire-Marie said, "A GPS, we have one, we call him Mason"

In our family he is known as The Human GPS.

We noticed years ago shortly after his diagnosis, that he has an uncanny sense of direction.

At age 3, days before the school year started we attended the open house of the school that he would be attending in our local district. The school, 20 minutes from our home, was a myriad of twists and turns and a difficult route for any child of his age to memorize.

But memorize he did.

On the first day of school, a few days after our open house visit we made our way towards school to drop him off on his first official day. As I approached the final right turn still 1.5 miles away from the school driveway I turned on my right blinker.

NO!
NO!
NO!

(One of the few words he spoke at the time)

He knew exactly where we were headed and he was already digging his heels in.

Left at the stop sign

NO!
NO!
NO!

Heels dug deeper.

Rashele and I looked at each other incredulous, not comprehending how on earth he knew where we were going when he’d only been to this building one time previously. Surely his memory couldn’t be that good, could it?

It was.

Since that fateful day we’ve realized that Mason never gets lost. He knows the location of every railroad crossing w/in a 10 mile radius of our house. He knows that if we are at the corner of University Ave and I-30 in Fort Worth, 60 miles from our home in Frisco, that we’re only a few blocks from the Fort Worth Zoo. A place we visit maybe twice a year.

Currently our daily routine at the end of the school day is to allow Mason to give exact turn by turn directions from his school to our driveway.

I learned last week if he says RIGHT to turn right, even if by doing so I know I’m going the long way. To disobey his order will cause a massive 1 hour meltdown (as I learned last Wednesday)

While I’m still learning everyday how his brain works I’ve realized that I can’t ever take for granted those “quirks” he has.

They are what makes Mason, Mason

Controversy on ABC!

2008-02-02T08:26:00.001-06:00

Of all the court dramas that have aired on TV for as long as the vaccine/autism link has been around, I’m surprised we’ve not had a show address it, at least not one that I can remember.

Quite honestly, I knew nothing about the new Eli Stone series, and wasn’t even aware of the controversy surrounding this particular episode. I only found out about it while posting news stories on this very site.

Thankfully it worked out that Rashele and I could sit down at watch it. As luck would have it, the Gods smiled on us that night and the kids were all tucked away in bed on time, freshly bathed, and without complaint, a true rarity.

We settled in and got to know the characters and threw our opinions back and forth to each other during the show. I remember Rashele commenting that for an autistic child, the actor sure did make a lot of eye contact. But we both felt he, and the others represented well.

One thing that we both noticed during the hour long show, was that not one pharmaceutical commercial aired during that time slot. Wow, I can’t remember the last time that happened. Much like I imagine the carnival midways of older times with the barkers pitching their snake-oils, I’m become accustomed to being inundated with commercials for every ailment known to mankind.

While personally the autism/vaccine link doesn’t apply in our case, I have many friends that feel this applies directly to them. I support them in their belief. The controversy that surrounds vaccines has resulted in us spacing out the schedule whether or not we have the support of our pediatrician and staff.

I’m always happy when a show airs, be it on Oprah, ABC News, or Eli Stone. And to me, it doesn’t matter if I agree with the content being delivered, because it raises awareness to our plight.

It makes people ask questions

The Never Ending Story

2008-01-23T21:16:00.001-06:00

We have a new bedtime ritual. As I noted a few blogs ago, we traded Mason’s nighttime bottle habit for me lying down with him to get him to sleep.

While I enjoyed the time that he and I laid in bed together, it proved too detrimental to my sleep patterns, as I’d often fall asleep before him.

Rashele would saunter into Mason’s room around 915ish to wake me up. The problem came an hour or so later when Rashele and I would retire for the evening. Thanks to my 30 minute power nap with Mason, I, now miraculously refreshed, would stare at our bedroom ceiling until somewhere around midnight before finally drifting off to sleep.

So in an effort to switch things up a bit I’ve stopped lying down with him at bedtime. Last week I tried telling him a bedtime story, being sure to incorporate his favorite setting and cast of characters, Disneyworld, and Mickey Mouse & Co.

We both have a great time with the story, switching it between a 1st person and 3rd person narrative throughout. This allows Mason to interact with dialogue during the story and add some of his own twists like tonight, when he asked Mickey to take him to dinner and feed him 15 chicken nuggets.

I really enjoy the Father/Son time we have each night. His eye contact throughout is phenomenal, and he hangs on every word, so I know he’s listening. So much so that on many occasions if I get stuck somewhere in the story, he interjects a piece of the story from the previous night, or week. He’s got a great memory, and he uses it to his advantage, and to our disadvantage.

The only downfall of our story time is even if I’ve stretched the story 10-15 minutes, he still hates for it to end, and the phrase “The End” sends him over the edge. He screams and cries and says “MORE! MORE! MORE!”

But thankfully it only lasts a minute, and a barrage of hugs, tickles, and goodnight kisses cure him, or at least calm him somewhat.

Searching the 'net. And searching, and searching, and searching......

2008-01-18T09:40:00.001-06:00

(My shameless Autismspot plug)

For the past three days we’ve been looking for a new car.

I realize as a man, this is my territory. This is my calling.

I should be able to walk in to a dealership and negotiate every possible bling/option for mere pennies on the dollar. And I should leave the dealership, snickering at the poor salesman’s misguided attempt to beguile me, as I confidently roll out of the parking lot knowing I received the best deal in the history of the car buying process.

However that’s not the case.

I loathe the car buying process.

I’ve combed over 150 Honda Odysseys, and visited over 3 dozen Dallas/Ft Worth dealerships via the World Wide Web in the past 72 hours.

I know the exact Kelly Blue Book trade value for my wife’s car.

I’ve dissected every possible combination of options, specs, sunroof vs moonroof, cloth vs leather, old vs new, and red vs blue.

Throw in some depression and grief and this reminds me of one thing, the days that spun my head around after Mason's diagnosis of Autism.

When Mason was diagnosed 3 years ago, for days the collective hineys of my wife and I were parked in one place, right in front of our laptops. We both read everything we could on Autism from the hopeful, to the absolutely dreadful. Like questioning the best deal on a car, we questioned what treatments we should start. And, based on Mason’s personality, which ones we shouldn’t. And if internet access was charged based on the number of websites visited, we would’ve incurred massive debt. I was overwhelmed by the amount of information that was out there, but it was very difficult to maximize it because the content was spread all over the web.

I was frustrated, and I hated it.

It’s that very same feeling of frustration that we hope to alleviate here at Autismspot.

As Kent has so eloquently shared in his blog yesterday, we’re truly passionate about what we’re doing. We're always thinking of new ideas, revamping the old ideas, and trading emails well into the late night and early morning hours. We want others to avoid going through the frustration that thousands of us have, searching tirelessly for information, treatment options, techniques, and most importantly HOPE!

See a topic, or a treatment option we’ve not covered?

Let us know.

Have something to share?

Let us know.

You see, we’ve been on the frustrated end. We want to change things in our community for the better, and most importantly we want you to be a large part of it.

We look forward to hearing from you.

- Joey

Brothers and Sisters

2008-01-15T19:20:00.001-06:00

I vividly remember the days that Mason refused to acknowledge the existence of his older brother and sister. To him, the family consisted of 3 people, himself, Mommy, and Daddy.

Many times we tried to get them to interact with one another, but Mason had zero interest. He’d gladly play in the same vicinity as they did, but never with them.

It made me sad. One thing I loved about my childhood is playing with my brothers and sisters from sunup to sundown. I wanted Mason to have that same pleasure, and I wanted Kyler and Claire-Marie to have it as well. Especially Claire-Marie, as Kyler goes to his Dad’s house a couple of nights a week.

They yearned for his attention so badly.

Things have gotten better lately. Mason still likes his “me” time and prefers to play by himself. However there are environments where he relishes the opportunity to play with his siblings.

For starters, the bathtub.

Granted, Kyler has gotten past the age where he’s going to volunteer to take a bath with his brother. Claire-Marie however is a different story. She LOVES to take a bath with Mason because it’s one of the few places where he really interacts with her. It’s really a joy to watch.

He does all those things he should be doing.

He looks her straight in the eye.

He tells her to blow bubbles in the water

He tells her to pour water on him.

She tells him to put bubbles on his face and pretend to be Santa Claus and he eagerly complies and they endlessly laugh. It’s a challenge to get either of them out of the tub. They really enjoy the time together.

Last night, Kyler and I came up with a new game to get some more interaction time for him. Mason LOVES to be thrown on the couch. I instructed Kyler to grab Mason’s ankles while I grabbed his hands. We swung him high in the air multiple times before throwing him on the oversized fluffy couch.

He collapsed on the floor giggling so hard that I was sure he was going to leave a puddle.

When he recovered he gave Kyler a hug and said “I love you Kyler, swing me again?”

So for the next 20 minutes, we repeated it over, and over, and over. He wouldn’t let us stop. Each time we threw him, he’d repeat the process of hugging his brother, telling him he loved him, and asking to do it again.

It was free therapy for all of us.

I’m glad I wrote this blog today. For whatever reason, it was a bad day. Writing this made me feel a whole lot better.

You can pick your friends, but you can't pick your family

2008-01-11T18:57:00.001-06:00

I think all parents of children on the spectrum at some point wrestles with informing the extended family. That’s been the case in our experience, and with friends who have children on the spectrum.

What do we tell them?

How will they accept it?

Will they love my child any less?

Will they feel awkward about interacting with him?

Or worse, will they be scared of him?

To be honest, these questions never crossed my mind. I’ve always been rather oblivious to stuff when it comes to my family.

My wife wasn’t however. She worried more about my family accepting the news than her own.

One thing I’ve often envied about my wife’s family is their ability to communicate with one another. They call each other all the time, for no reason other than to ……..talk!

That is somewhat foreign to me. In my family we seem to talk when we need to.

Rashele’s family knew of Mason’s diagnosis within minutes of us leaving the doctor’s office. Her family listened intently when we informed them of Mason’s diagnosis. They asked questions. Over the next few weeks they read things about autism on their own. When they saw him, they studied him, and asked more questions.

In my family, while we all love each other dearly, we’re a bit different. I come from a large family of 6 kids. Communication isn’t our strong suit, hence why I have issues in this area. We’re not overly chatty folks, and there are times when there are awkward silences, or just small idle chit chat to fill the dead air. Rarely do we ever venture into important topics like politics, religion, etc as they tend to turn into arguments. For the most part we all tend to stay out of each others’ business.

Rashele has had to get on me a number of times for not sharing information with them, important events, new jobs/promotions and the like.

After Mason’s diagnosis, she needled me to call my family. I kept putting it off partly because of all of the reasons above and also because:

1 – I hate to talk on the phone

2 – I didn’t completely understand all this autism stuff yet. So explaining it was going to be difficult.

I eventually got over myself and did call them and overall my family took it well. Although I don’t think it was met with the seriousness that it required when it came to my mother.

Now understand, my mother is a great woman, and I love her dearly. She has many qualities that I admire, and I attribute a large part of who I am today to her. She did a great job raising all of us.

But……

When we discussed Mason, and his lack of development, my mother, made an excuse for every possible delay.

I think it’s a generation gap thing.

When we told her he wasn’t talking like he should be at this age her reply was, “You were a late talker too, so were your brothers”

When we told her he wasn’t making eye contact, her reply was “He’s just shy, don’t worry about it”

When we told her he wasn’t social with anyone, her reply was, “He just likes to keep to himself, just like Grandpa” Which in itself is true, my dad can be anti social at times, he likes his peace and quiet. I often joke with my wife that my dad has sensory issues when it comes to crowds, noise, etc.

Getting back now to my mother. When she’d baby-sit, and we’d present her instructions on how to care for Mason, she’d sigh and say “I’ll be fine, I’ve raised 6 kids”.

She just wasn’t getting it.

Mason is nothing like any of the kids that she raised.

I can’t blame her I said the same to Rashele when she suspected something was amiss with Mason and all his misplaced milestones.

Thankfully Rashele doesn’t listen to me much.

As time went on, things got better. My mother picked up on our cues and has since adjusted very nicely. She even consults us on every birthday and Christmas gift.

Just last week she babysat and brought Mason new pop-up books, each about numbers and letters which is his “stim” of choice.

That night, she was Mason’s newest best friend.

Basically, we let everyone in both families know, the best thing they could ever do WITH, and FOR Mason was to get down on his level, literally.

Engage him.

We told them to check their pride and embarrassment at the door, and get on your hands and knees and look him in the eye. Make and hold eye contact with him whenever possible.

Push his Hot Wheels and toy trains around the carpet with him, and make all those same crazy sounds and mimic all those pretend play things we did when we were kids.

Make a mess with him if that’s what he wants to do.

These are our house rules, and once you step into the house, you must obey them.

We thank them for it after every visit.

I'm optomistically hoping that he’ll thank them for it later.

Autism 101

2008-01-09T18:34:00.001-06:00

A couple of weeks ago I had the opportunity to meet the brother of one of my best friends. My friend and I have known each other for nearly 20 years, and I was meeting her brother, whom I had heard about for years, for the first time.

Upon meeting over lunch, he immediately noticed the puzzle pin on my shirt, and inquired to its meaning. I explained that it was representative of autism, and worn to raise awareness. I explained that my youngest son Mason was diagnosed 3 years ago.

Over lunch, the conversation turned to autism. He, having no children, knew very little about it..

He asked the inevitable… “What is Autism?”

Ah… The Dangling Carrot……

I went into my usual, now well rehearsed, diatribe of explaining autism, as I’ve done to coworkers, friends, acquaintances, and anyone who feels like listening. Throwing out words and phrases like; neurological disorder, inability to communicate, lack of eye contact, and all the other red flags.

I did my best to keep the conversation simple, yet at the same time hitting home the point of how dire our situation is as parents, and as a community. No one knows what we struggle with on a daily basis, and achieving even the simplest of tasks with our children is akin to reaching the summit of Mount Everest in a pair of flip-flops and Bermuda shorts.

After my short speech in between mouthfuls of spaghetti marinara, I was peppered with more questions… causation, costs, medication, long term care, and the like.

“Wow” I thought to myself “This guy doesn’t know what he’s in for and my lunch break is only an hour long”

We touched on all those subjects, and I explained some of the controversy around them, even within our own ranks and in the end, we had a great discussion. I know he walked away knowing more than he did before we met. And I hope it was something he could take with him and that it affected him positively in some manner.

I thought how great it would be if everyone took such an interest besides those of us under this umbrella.

Press 1 for Frustrated

2008-01-03T19:29:00.001-06:00

A New Year, new goals, and a new round of limited submissions to the insurance company.

In my youth, and admittedly sometimes in my “adulthood” I’ve somewhat felt that insurance was in large part a scam. Pay lots of money into a system with hopes that you’ll never have to use it. Finally when the time does come, it's a hassle. They don't like giving the money back.

I don't have much hair left.

Unfortunately with Mason’s diagnosis came plenty of circumstances to have to interact regularly with my insurance company. At times I’d almost prefer to pass a kidney stone, than to have to deal with them. (my wife assures me that I do not ever want to experience a kidney stone…she’s had them)

I can call the number from memory, and recite my group number without consulting my card. I can now navigate thru my insurance company's automated voice/button menu without blinking. I know precisely where I need to utter the word “Representative” to the human sounding robot listening on the other end of the line.

In its cryptic monotone human/robot voice…..One moment please…..

Finally… a human.

Sadly at times, I think the humanoid/robot type being that answered the phone would be a better candidate for giving information. He/She seems to be a bit more friendly and cheerful in most cases.

Speaking with the live person is hard work. I have to hope that I’m lucky enough to land someone with a clue can answer my questions and at the same time give me accurate information. This isn't always the case.

Sometimes I get great service and other times not so much.

And during the calls I dare not mention the “A” word. I quickly learned one slip of the tongue mentioning the word “Autism” can cause a claim to be denied.

I've grown accustomed to the phrase “Please hold Mr. Barton while I read thru your claim file”…. this is often followed by a lot of typing, and long moments of silence. I usually multitask during this “downtime” because after several months of having to call, I know it’s going to take the human time to read through it. Mason’s file has reached War And Peace proportions.

Just yesterday a reimbursement check arrived for services that occurred almost a year ago.

Christmas arrived early….or late depending how you look at it. ;o)

Should I stay or should I go?

2007-12-28T22:21:00.000-06:00

The Clash’s Mick Jones said it all.

Should I stay or should I go now?
Should I stay or should I go now?
If I go there will be trouble
And if I stay it will be double
So come on and let me know
Should I stay or should I go?

We are admitted Disney-holics, and sometimes I feel we’re in dire need of a 12 step program.

Months ago Rashele saw that Playhouse Disney would be on tour around the US. So being the true fan, she monitored sale dates. When she saw that Dallas/Ft Worth would be granted a show, she was up at the crack ‘o dawn to grab them the second they were available online.

Thankfully camping out in lines like we did in the old days at Ticketmaster, are a thing of the past.

Thank you Al Gore, for inventing the Internet.

As luck would have it Rashele scored 4 great seats, and we looked forward to the show. The show featured 3 of Mason’s favorite Disney shows, Little Einsteins, Mickey Mouse Clubhouse, and Tigger & Pooh.

Now with Mason, going to any type of show, be it a live show or a movie can be an adventure. And no adventure is ever the same adventure twice. We began verbally prepping him 2 days ago that we’d be seeing the show. We showed him some video clips on YouTube, and pictures we found along the way.

As we pulled into the parking lot tonight we all got excited about seeing the show. I turned around to him and said “Mason do you want to go see Pooh?”

A defiant NO! was his answer.

This wasn’t going to be pretty.

He started flipping out, though it was a mild flip out compared to some we’ve seen. As we entered the arena he asked repeatedly to go home. But as he saw some of the Little Einstein, Mickey Mouse Clubhouse, and Tigger & Pooh displays scattered throughout the lobby, I felt him loosen up.

However, he didn’t stay loose for long. We left the lobby and entered the seating area which was expansive and dark. The music being piped in was a little loud and overwhelmed him somewhat and he immediately asked again to go home. But we pressed on and found our seats near the front section.

As we sat, he grabbed my hands and pulled my hands up to his ears. He likes me to cover his ears with my hands as it allows him free use of his own hands to feed himself Oreo cookies.

As the show started, the lights dimmed.

Not good.

WANT TO GO HOME! WANT TO GO HOME! WANT TO GO HOME! WANT TO GO HOME! He yelled repeatedly

I partly thought I should bail with him and wait it out in the lobby, but decided to see if he’d decompress and adjust. He did. However, based on the expression on his face throughout the first half of the show it appeared that he was very uncomfortable and highly stressed.

His ears remained covered the entire first half of the show.

At intermission he miraculously recovered and was no longer asking to leave. He sat in my wife’s lap and we waited for the 2nd half of the show to begin.

He was an entirely different child. So much so I was convinced someone must’ve switched him when we weren’t looking. He no longer wanted his ears covered, he wasn’t wearing that pained expression on his face, and at times, I swear I heard him singing some of the more familiar songs.

Then the show came to an end. Mickey, Minnie, Goofy, Pooh, Donald Duck & Friends all waved goodbye.

The curtain dropped.

The house lights came on.

Mason looked at the stage incredulous.

AGAIN! AGAIN! AGAIN! He shouted. When we told him that the show was over and it was time to go home, came the mother of all breakdowns.

He lost it, and threw a fit all the way out of the building, through the parking lot and in the car ride home.

Rashele, ever so patient, talked quietly to him in the back seat. And like putting a cranky alligator to sleep, she rubbed Mason’s belly to calm him down. (this only works when Rashele does it)

Sigh....

Christmas and the Gentle Giant

2007-12-26T09:00:00.000-06:00

Christmas Eve and Christmas were everything I imagined they would be.

Absolute Mass Chaos.

Don’t get me wrong, it was a good mass chaos. I always look forward to all the family events surrounding the holidays.

Most of my family lives within a 10 mile radius, and that’s always chaotic in its own right. Couple that this year with Rashele’s entire family being in town from Austin, and Amarillo. It made for a crowded house most of the time. It was easy to tell when it got to be too much for Mason as he’d simply exit stage left to a quiet corner of another room and play blissfully by himself.

Then Uncle Jimmy would find him.

I don’t know what it is about my brother in law that makes it so easy for him to connect with Mason. NO ONE, outside my wife and I have a connection to him like Jimmy.

He’s not the kind of guy you’d like to meet in a dark alley. He’s big, he’s loud, and he’s country. A stocky 6’ 3” if I had to guess. He has a salt and pepper colored goatee that we thought would scream texture issues, and a deep, loud, gruff voice, that if not whispered can make walls shake.

When not in his truck, he’s on his Harley.

And he wouldn't seem out of place at all if he were riding with a wild, leather clad band of Hell's Angels.

Less Hell.

More Angel.

Mason LOVES him.

Whenever the 2 of them happen to be in the same geographical location, be it here, or when we visit Amarillo, Mason plays the shy card for a few minutes, but eventually will be coaxed into Jimmy’s lap and be completely content. They lie down and play on the floor together, or sit at the computer and play games. Jimmy will scratch Mason’s back and have him so relaxed that we often think he’ll put him to sleep.

Jimmy is a natural

Santa envies Jimmy. He'd kill for that kind of attention.

My Daughter the Activist

2007-12-20T16:52:00.001-06:00

Yesterday at the office I got a phone call.

Caller: Hello Mr. Barton? (No one calls me Mr. Barton...this had to be bad)

Me: Yes, this is he.

Caller: This is Mrs. X, Vice Principal at your daughter’s school.

My side conversations with co-workers stopped. Blood rushed from my face. The world stopped spinning momentarily.

Not because I feared she was hurt. Based on the tone in the Vice Principal’s voice I knew my daughter was in good health.

I remember in my youth when my parents used to get calls from my vice principal. It was never a good call. I immediately thought of what she could’ve done.

Mentally, I suspected those Tae Kwon Do lessons that she started months ago may have been a bad idea.

Let’s get back to the call.

Mrs. X sensed my hesitation, and I suspect she used her Vice-Principal superpowers to read my thoughts.

She continued, “The reason I’m calling Mr. Barton is a good one”.

Whew!

In a nutshell, my daughter was being recognized for positive behavior. She was singled out by her teacher for being one that always speaks kindly to others, and offers help to anyone in need. Her teacher even commented her on being a great big sister, as she knows that Claire-Marie meets Mason at his classroom every day and walks him to our waiting car.

Mrs. X Vice Principal continued, “On Friday she’ll be recognized in the morning assembly in front of the entire school”.

Awesome!

If anything, Claire-Marie’s life experiences of having a brother on the spectrum have turned her into a crusader, a volunteer, an activist, and good Samaritan, all at the tender age of 7. She lives to help him. Many times Mason pushes her away, but she doesn’t let that get her down. She’s always ready to help him even if that means not helping him.

She loves to talk to strangers, something we’ve tried to cure to no avail. She readily tells anyone she comes in contact about her brother and autism, and all the successes he’s had, along with his challenges.

She’s become very patient, and tolerant of all our daily errands which seem to always center around Mason, or his therapy sessions.

When getting dressed this morning for school, she asked if I would be attending the assembly on Friday morning.

“I wouldn’t miss it for a bazillion dollars” I told her.

She beamed, she knew I was proud. But it wasn’t just about the recognition, but about the person she is shaping up to be. I told her that. It’s important that she knows it.

She already picked out her attire for the assembly.

She demanded that gets to wear her “Cure Autism Now” t-shirt on stage for all to see.

She always seems to have her own agenda.

Two Steps Forward, One Step Back

2007-12-18T07:05:00.001-06:00

We made it.

We’re bottle free.

At birth, despite the great packaging, Mason never took to breastfeeding for more than a few weeks, 4 to be exact. Milk was his comfort, and the convenience of a bottle full of milk appealed to him greatly.

It was his nighttime security blanket, serving as a pacifier at night that would get him to sleep. (Sleep is a whole other issue for him)

He took the bottle wherever he wanted.

On occasion, I suspect on purpose, he’d hide a full bottle of milk in some obscure place. I think he enjoyed us playing the game I refer to as “What’s that smell, and where is it coming from?”

A bottle was a big deal to us. It served us very well as it was one of the first things in which he could elicit a word that communicated a need.

So as noted, at 28 days old he was done with breastfeeding. Approximately 1,634 days later (I calculated it) at the age of 4 years, 5 months, and 20 days, Mason kicked his dirty habit. No patch required.

We chose the week of Thanksgiving to quit cold turkey, no pun intended. As we prepared to head out of town to see my wife’s family we took Mason over to the garbage can to have him throw away all 3 of his bottles. We knew if we left town without them there was no turning back. We were going to stick to our guns.

We made a big hurrah over it, clapping and cheering, dancing around the kitchen. He looked at us like we were insane. “They’ve lost it” I imagined him saying to himself.

But it worked.

During the trip, there was protest, and fits of rage, but after being reminded that he was a “big boy” now, he relented and succumbed to the powers of the insulated sippy cup.

I know what he’s thinking… “Wow…my milk now stays cold for HOURS”

Of course with every step of progress there has to be some setback.

For about a year now, Mason’s bedtime ritual was pretty well set in stone. It would consist of potty time, wash hands/brush teeth, and a nice bottle of milk to head off to bed with.

He was content.

So content in fact that we would simply turn off his light and he’d go to sleep on his own.

Now since we took away his most precious bedtime commodity, he’s needed a new bedtime comfort.

Me.

I am now his security blanket. He asks “lay down with you?” every night, and it’s impossible to resist. Such an awesome little boy that has had so many issues with speech is asking me to lay with him.

How could I ever refuse?

It's a setback I can live with.

So I lay down with him, stroke his hair, and enjoy the best 20 minutes of my day.

Then Rashele comes and wakes me up.

:o)

Cliff Notes vs. Encyclopedia Britannica

2007-12-13T17:23:00.000-06:00

I’m Cliff Notes. Rashele is Encyclopedia Britannica

I’m not allowed to go to Mason’s doctor visits alone anymore.

Allow me to explain.

My wife and I are VERY different people, and truthfully I sometimes wonder how it is that we ever ended up together.

I’m a laid back person. Little bothers me. Rashele is the exact polar opposite. She’s extremely organized and I hesitate to say “high strung” because she’s not. Let’s just say she’s a stickler for details.

On the Monday after Thanksgiving we had a scheduled appointment with a nutritionist that came highly recommended from many in one of our online support groups. Since Mason was making breakthroughs and was now experimenting with some new foods, we wanted to have a consult done, and test for food allergies.

We’ve never suspected any allergies until very recently due to some exposures at school, and at therapy where we think rice was a contributing culprit. His eyes were irritated and swollen near shut for a few hours. Thankfully a dose of Benadryl helped alleviate some of his discomfort.

Since I was still on vacation this day I was going to be attending the consult alone. Rashele was back to work after a well rested vacation during the week of Thanksgiving.

I remember her words as I walked out the door on the way to the appointment… “TAKE GOOD NOTES!” and she slipped a notepad and pen in my laptop bag.

The consult with the nutritionist yielded a wealth of information. We went over everything in Mason’s daily menu, which happens to be a very limited. We went over gut issues, bowel movements, cravings. I even showed pictures of his eye swelling incident and told of my suspicions on what led to it.

Nearly 2 hours after it began, the consult came to an end and I made my way to the car. As I prepared to put away my things, I looked at my notes. Somehow I had only managed to scribble a couple of lines of information which was hardly even legible to my own eyes. I immediately recalled Rashele’s words as I was walking out the door.

“@!#%!$#@!%#$ I’m going to hear it” the little voice in my head told me.

Sure enough I was right. Seconds within walking in the door the interrogation started.

I did my best to explain everything that was covered in the meeting, but wasn’t doing a very good job.

Rashele comes from a long line of debaters, and she has a habit of firing off questions faster than I can think and/or answer them. It didn’t make for a pleasant afternoon for either of us.

We eventually stopped talking for a couple of hours.

I can formulate thought MUCH better in writing than I can verbally, hence why I like to blog.

To fix things, I sat down and wrote down everything that was covered in the consult, a brief “cliff notes” so to speak.

Once complete, I presented it to her, and this opened up better dialogue about the appointment, and made it much easier for me to relay information
This fixed things and we were speaking again.

Had Rashele gone to the meeting, I would’ve received a powerpoint presentation, along with a 30 minute commentary, followed by a perfectly collated set of leather bound books

Thanks!!

2007-11-22T20:45:00.000-06:00

I wish to thank all of those therapists and teachers that have worked so hard with Mason this past year.

Megan Spohn - Oral Motor Therapy
All the intructors at Spirit Horse Therapy - Corinth Texas
Our Children's House Baylor - Stephanie, Heather, and Radji
Riddle Elementary - Ms Amy, Ms Jodi, Mr Nathan, Donna K
Sparks Elementary - Mrs Yates, Ms Linda

We've seen great strides in many areas, and hope to see more in 2008

I wish to thank our extended families who have given a great amount of support and love to Mason and have helped us whenever asked.

They love him a great deal.

Many thanks as well to our friends in the autism community, especially those in the SAINT group. We learn so much from all of you, and Rashele and I value the friendships we have made tremendously.

A recap of our day..

Our Thanksgiving holiday was cut unexpectedly short. Mason came down with a nasty cold and we elected to depart from Amarillo a day early. We left before our turkey feast ever made it to the table. We dined on grilled cheese sandwiches, and cereal once we made it home to Frisco. (We need to do some grocery shopping)
He's much happier now that he's home, but it will probably be another long night of coughing and fever.

Another shout out of thanks goes to Robitussin NightTime Cough & Cold medicine. Crossing fingers that we get more sleep tonight than we did last night.

;)

I've reached Reese's Peanut Butter Cup overdose

2007-11-01T20:22:00.000-05:00

I feel peanut butter coursing through my veins.

Last night, for the first time in his 4 years of life, Mason went Trick or Treating. He had a lot of fun, but I think we had more fun last night than he did. We really enjoyed the moment of being a "typical" family.

Mason doesn't "do" costumes. If he's wearing something, it had better resemble regular street clothes.

So since a costume wasn't going to happen we did the next best thing. Black sweats, and an orange sweatshirt. Rashele used her artistic ability and drew a nice pumpkin on the shirt. (you can't see it very well in the picture)

This year Mason actually enjoyed the door to door adventure. he's always looking for a reason to ring a doorbell.

He held hands with his sister when she managed to patient enough for our snail's pace going house to house. Eventually she ditched us and ran from house to house with her friend Diego.

He walked the entire time. He never once asked to be picked up and carried.

He managed to say "Trick or Treat" and "Thank You" and "Happy Halloween" at every door. He made great eye contact with perfect strangers.

He didn't really understand why these people, complete strangers, were giving him candy that he had no intention of ever eating. (see my Will Work For Food Post)

That's where I come in. Man Reeses Peanut Butter Cups taste good when they're frozen.

Brooklyn Bridge For Sale

2007-10-28T08:53:00.000-05:00

Since we're down in these trenches of autism with a lot of other people, I've noticed we all tend to draw our own lines in the sand amongst each other. In those trenches, we tend to pair up in foxholes with those whose line of thinking is the same our own.

It's senseless. We should be united in our War on Autism.

Twice in the past 2 weeks I've heard a "theory".

The theory, and I use the word theory very loosely, is that the mission of Autism Speaks is, and I quote, "to wipe out the entire autistic population through prenatal testing and eugenic abortion"

Wowza.

A shocking opinion, and a pretty big blanket statement.

It's absolutely asinine, and I don't think it could be further from the truth.

I entirely get that some of us like Autism Speaks, and some of us don't.

That's fine and dandy.

But c'mon... let's at least be a little logical and use some reasoning.

Personally knowing many, many people throughout the Autism Speaks organization, including Jon Shestack, and Peter Bell, amongst others, I know that their line of thinking does not even remotely pair up with this belief in eugenic abortion.

What I do know about those inolved in this organization is that many, a majority most likely, have a direct link to Autism. Be it a child, a sibling, a cousin, a friend.

They get the suffering.

They get the despair.

They get the stress.

They also understand the hope that early intervention brings.

Prenatal testing doesnt mean abortion. It's a means
for parents to be prepared from Day One. No matter what dilemna they are facing, be it Autism, Downs, CDH, or anything else.

How many of us would've loved to know that our child was going to struggle with Autism on the day they were born, so that we could start inverention earlier?

You can't see me but I'm raising my hand right now.

If we had known, we wouldn't have wasted the first 18 months of Mason's life thinking he'd "catch on".

How many of us would've aborted?

You can't see me but, I've lowered my hand.

Mothers of the disappeared

2007-10-16T21:25:00.000-05:00

This song, one of my favorite U2 songs, came across my iPod on my evening run tonight.

I hadn't heard it in a very long time, years possibly

I found the title fitting.

It's a quiet and somber song, and it made me think of our children struggling with autism, and the role of mothers. The children that sometimes seemingly are out of reach, living locked away in their own world, in a place where only they exist, and the mothers that work tirelessly to coax them into today.

Lately when I've had the opportunity to escape for a bit and run, my thoughts have been focused on the twists and turns Mason has faced on his path over the last nearly 3 years. He's stumbled a bit, fallen down, gotten up and dusted himself off and kept on running.

His therapies have really been helping him progress in the right direction and have made me cautiously optomistic about his future.

He's not as "disappeared" as he used to be.

My thoughts also turn to my wife. Rashele is always a bit more guarded about Mason's future. She's a fantastic mother, and like any mother, wants the best for him. I've often felt as a father I do less than Rashele does when it comes to Mason. She doesn't think that to be the case, but it's something I think of often. Her dedication to him is without limit, and at times can be a double edged sword, as it leaves little time for any of her personal extra curricular activities. I have to make her take time out for herself so she can recharge.

I credit Rashele for most of what gets done around here. She plays the role of Mother, Taxi Driver, Chef, Banker, Therapist, Cheerleader, Travel Agent, and Doctor. On top of all that, she has a part time job, that many weeks stretches into full time. Somehow she always finds the time for what needs to be done.

She's taught me many wonderful things over the course of our happy marriage.

I can even fold fitted sheets because of her.

I'm even a better father because of her.

Lions, Tigers, and Bears, Oh My

2007-10-13T20:30:00.000-05:00

We had a great day at the zoo today with our autism support group. We go by the name SAINTS, which is an acronym for "Support for Autism In North Texas".

We have a lot of great people in our group. We offer each other a lot of advice and moral support. Thankfully we don't delve into the political stuff too much. There are other forums for that, and they tend to be a mess. We all have enough stress in our lives, its nice not to get bogged down in the politics.

Our group communicates almost exclusively via email, but we have had some get togethers so that we can meet face to face on occassion, both with and without kids. I think we parents all appreciate when we've been able to sit down, just as adults, and visit.

But today was a family day...

We had picture perfect weather at 10:00am when the gates opened up at the Fort Worth Zoo.

Mason enjoyed the zoo more today than he ever has in the past. Now that he's learning to point, he was more easily able to engage us when an animal piqued his interest. And watching him walk hand in hand with his sister was priceless.

She is very protective of him, and guards him like a crazed rabid pitbull.

Throughout our 4 hour expedition at the zoo, if Mason was familiar with an animal, like an elephant, he'd imitate their sound. It was funny to watch when he saw an animal that makes no noise, like the giraffe, and we could see his wheels spinning. He eventually ad libbed.

Since the Fort Worth Zoo is large, we didn't tour the zoo as a group. We'd see each other as we meandered down the paths and chat for a few minutes before our kids pulled us each away to the next exhibit.

But my family and I had the opportunity to sit and lunch with some friends of ours, Stacy and Jeff Crowe and their 2 children. Their son Jackson, just a bit younger than Mason was also diagnosed with autism.

Watching both Jackson and Mason side by side (unintentionally and NOT interacting w/one another) I noted their similarities, and their vast differences.

Observing them over the course of lunch, made me think of how it's been mentioned many times that you can place 1000 children affected by autism in a room, and note all their similarities. But at the same time you'd see how enormously different they are from one another.

Seeing Jackson and Mason together really made this hit home.

Both the same.

Both so different.

This was like deja vu all over again - Yogi Berra

2007-10-10T20:20:00.001-05:00

Well Day 1 at the new school has come and gone. It went much like the first Day 1 at Mason's former school this year.

We made an unannounced visit to the school yesterday to have Mason see the classroom for a few minutes. This was by design as it would make today's adjustment a bit easier.

Or so we thought.

We've been verbally prepping Mason all week about the upcoming change to his new school, classroom, and friends. He seemed accepting of it and seemed to understand that a change would soon take place.

As his class start time approached he willingly got out of the car, threw on his backpack with minimal assistance and walked hand in hand with us to the door to meet his teacher already awaiting his arrival, and the arrival of his other classmates.

All seemed well until he realized that there was going to be some parental detachment. I assume he figured we'd be going to class with him today. And as soon as he realized the contrary he threw a fit.

But what kid doesn't?

It's typical 4 year old behavior as far as I'm concerned. It wasn't one of the hellacious meltdowns we've been subjected to before.

The school day (a whopping 3 hours) went by quickly for Rashele and I. For Mason, I assume it seemed like an eternity. After speaking with his teacher, she said that after we left he readjusted, and handled the rest of the day like a champ.

It's what I've come to expect of him.

Championship effort.

Movin' on up... To the West side

2007-10-08T20:03:00.001-05:00

We knew this day would come and it's bittersweet.

Around 3 weeks ago, Mason's teacher told us some crushing news, he was soon going to be moved up to the PPCD class.

It crushed us because we didn't know how he'd handle the change, much less how we'd handle it. And quite honestly I wondered in the back of my mind if this is where our relationship with the school district would go South. That thought constantly lingers there for me. I hate that it does. I'm always waiting for the other shoe to drop, which is odd for me, I'm always an optomist.

His moving up to the PPCD class is a graduation of sorts. The PPCD class is a pre-K class for children with disabilities, not solely related to autism. He is moving out of his TLC class because his teacher, and the district feel he is now adequately verbal. We agree with this statement. We've seen a great deal of progress in verbal ability over the past few months. It's been a great success for him. And we all take credit in it happening, though no one deserves more of the credit than Mason himself. He's worked very hard.

We love the teachers, aides, and administrative staff we've worked with thus far. And we know that they love Mason a great deal. I wish everyone could have had the good experience we have had with the school district. I know we're in the vast minority. It's a shame too. I think most bad experiences are to be blamed on red tape,bureaucracy, and the inability to think outside a box. Statewide, there are some caring teachers and aides out there that get it. But there is an imbalance. If Texas put as much emphasis on special education as it does on High School Football, we'd be thrilled.

What makes this transition to the new class bitter is that he's leaving an environment in which he's grown accustomed to, in which he's thrived, and in which he's loved.

What makes it sweet is that he's moving to a new campus, our home campus in West Frisco. Beginning on Wednesday our 20 minute Eastern commute to and from Mason's school will be a thing of the past. His goals, including his inclusion program will be kept intact.

One less ball to juggle.

The R Word

2007-10-03T21:07:00.001-05:00

No .. not Regression, the other R word.

My good friend Teri told me of a conversation she overheard while shopping the other day.

One mother was conversing to another mother at Walmart. The conversation went something like this. Mother A was talking to Mother B, about a mutual friend. The mutual friend, also a mother, has a child struggling with autism.

Mother A said to Mother B - You know Autism is just a fancy word for saying they're retarded.

I cringed when she told me this story.

I hate that word.

My other good friend Vincent, lives by the following Dr. Martin Luther King philosophy:

Violence is not the answer.

I agree, it's not, however, I gave Teri permission to choke out Mother A if she should ever see her in the produce aisle again.

I'm always willing to make an exception on that "Violence is not the answer" theory.

Vincent said he only uses it as a guideline. Not a hard fast rule. So there are some loopholes.

I must be watching too much UFC Fight Night.

:)

I can't die

2007-09-30T14:41:00.000-05:00

I had the opportunity to attend a funeral yesterday afternoon. An old friend's daughter was murdered earlier this week. The news deeply saddened me. Not in just her passing alone, but in the way her life was taken. I remember meeting her when she was 3 or 4 years of age. My friend, who I have not seen or talked to in over 10 years, is mourning a tragic loss. By his side are his wife, and 2 other children. A son and a daughter. After the service ended they shook hands with all 1500+ that attended and mourned by their side.

I say opportunity because nothing puts life in perspective like death and a funeral. And I'm always looking for perspective on life.

Upon the hour commute from the service back to my house, I had plenty of time to reflect on the loss of a promising life cut far too short, the service, and my friend's family. I also thought how such an event would change Mason's life, if my life, or heaven forbid, my wife's life was cut unexpectedly short. No matter the cause.

What will happen to Mason when I'm no longer around?

Will he have the necessary life skills to carry on until his own mortal expiration date?

Will he have forged at least some sort of personal relationships with others that love him that will ultimately serve him well?

I'm sure I'm echoing what almost all parents of children with special needs have expressed at some time or another.

While I sincerely hope Mason gets mainstreamed in the classroom setting and is successful in his "book smarts", will I ever be able to get him to comprehend "street smarts"?

How do I teach that to a child that has little to no social skills?

I wish they sold immortality in a bottle.

To my friend, I offer you my deepest sympathies. I cannot begin to imagine the pain and suffering. May God bless your family in this time of great need.

R.I.P. Melanie Goodwin 1988 - 2007

My Kingdom for a Horse

2007-09-15T18:57:00.000-05:00

Some of the best things in life are free.

Over a year ago, I received an email about a study being conducted by UT Southwestern Medical School. They were looking to gather a group of children affected by autism, and have them work with horses as a form of therapy. As good luck would have it, Mason was within their target age group. I quickly responded to the email.

Once received, I promptly handed the phone book sized paperwork to Rashele to fill out. (she has much better handwriting).

We promptly submitted the paperwork, and were immediately placed on the waiting list. Months that seemed like years went by. Finally, in March of this year, he started.

He's started out small. On a pony.

The therapy itself is all encompassing. Mason is walked thru many tasks by his instructor in precise order, step by step. It teaches him several different things, communication, grooming and tacking, and riding at a slow pace to a trot. It's been great for helping him develop some much needed upper and lower body strength. He has to pick out, and carry the saddle blanket. Once that is complete, the saddle is next. This offers him a little more of a challenge as the saddle, while kid sized, is bulky and heavy for him. But he's determined, and he's a hard worker. He knows that the payoff is some enjoyable riding time. When the ride ends, everything is done in reverse order. He puts the saddle back, as well as the blanket, and bridle, and brushes the pony. He caps off the day by feeding his pony some well deserved carrots.

The facility that graciously donotes this therapy and their time is Spirit Horse Therapy in Corinth, Texas. As a parent I cannot sing their praises enough. The first line on their website says it all. Here it is in it's exact context:

"We have, in 5 years of operation, heard 33 children speak the first word of their lives, seen 28 children walk for the first time, and seen 26 children sit up for the first time on one of our ponies. "

They truly understand the importance of what they do. They don't limit helping only those affected by autism, but those affected by any number of special needs. They are non profit, and made up mostly by volunteers. They are an incredible group of people and I am forever indebted to them.

As I noted in previous posts, Mason hated animals. A few months ago for our summer vacation, we visited Florida. And no Florida vacation is complete without a visit to Disneyworld.

We've been to Disneyworld regularly for the past 10 years. Mason at age 4, has already been there 5 times. So he knew the drill, and he knows the parks well. This particular day we were at Animal Kingdom and our two older children wanted to visit the petting zoo. Mason has always avoided this in the past, usually staying outside the fence to watch. However this time as we approached, he let go of my hand, walked thru the gate, and chased down every goat, sheep, or calf that was within his range.

This is the first time he's ever wanted to be within 50 yards of the petting zoo. He had a great time, and after 20 mins, and having chased and petted every barnyard creature there, he was satisfied enough to be torn away.

This is all because of Spirit Horse, a great instructor, and a pony named Butterscotch.

Will work for food

2007-09-13T10:35:00.000-05:00

Looking back on one of the most celebrated events in a child's life, the coveted 1st birthday, we should've seen it coming...

We sat Mason at the table at his Grandparent's house and gave him the customary piece of chocolate cake. It was larger than his head.

We stood by with cameras, ready to permanently catch the moment on film like had been done for his brother, sister, and all cousins before him.

Mason looked confused.

Which quickly changed to a look of disgust.

He didn't touch it.

Wouldn't even it lick it.

We put the cameras away.

He was always a finicky eater. During infancy he semi willingly ate his baby foods. But as the textures of those foods increased, so did his reluctance to eat them. It snowballed from there.

Today Mason lives on a very limited menu. This has made following the GFCF diet impossible for now. He'd starve to death.

Here's a list of what Mason will eat:
Graham Crackers
Strawberry yogurt
An occassional slice of pizza
Goldfish crackers
Toast with butter and cinnamon/sugar
A specific brand of organic macaroni and cheese
Waffles
Pancakes

That's it. He likes his carbs.

Earlier this year Mason started working with a private therapist that comes to our home. We call her Megan the Magnificent. She has a long history with Mason, and she's produced great results with him.

She's literally been with him since day 1. She was his Speech Therapist in the early days of his autism diagnosis, and he really loves her. Fortunately for us, she also works on oral motor therapy and food issues. With her help, we've seen some really solid progress, especially these past few weeks, in tasting, and chewing new foods.

Getting him to eat still remains a daily struggle. He'd just as soon drink milk all day long, rather than eat solid food.

But we know what works. Bribery.

Eat food = computer time. So far this has worked well for us.

Hmmmm....maybe this will work for his piece of birthday cake next year...

All work and no play makes Mason a dull boy

2007-09-08T13:19:00.000-05:00

Mason has worked hard. Really hard. For the past nearly 3 years, his days have been filled with hours of occupational therapy, physical therapy, speech therapy, horse-riding, oral motor therapy, floortime, and lot of creative freetime. And anything else that sounded good at the time.

Never in the beginning did we see pretend play. Which I learned is a crucial part of a typical child's development. It was about 8 months ago when for the first time, Mason willingly picked up a stuffed animal.

What's the big deal w/a stuffed animal you ask?

Mason has struggled since infancy with some severe texture issues. Not just with food (thats a whole different post) but with anything that he touched.

To touch a stuffed animal would literally make him gag. To the point he would nearly vomit. Anything ultra soft, or even sticky triggered that reaction.

He hated animals, those full of flesh and blood, or those filled with cotton, polyester pellets, or any other form of artifical stuffing. In our household we have 3 cats that for the most part keep to themselves. Rarely does he acknowledge their existence, and frets a great deal when they violate his comfort zone. This comfort zone is a 3 foot radius. No entry permitted. Violators will be subject to shrieks and screaming.

So back to that day 8 months ago. Our older 2 kids were nowhere to be seen. In the playroom, we heard Mason talking to himself as he often does. I took a peek and didn't believe what I saw. I quickly motioned for Rashele to come look.

Laying there on a blanket, was Mason on his back. He was holding above him a stuffed lion. Talking to it, and mimicking it talking back. This was a breakthrough moment and huge milestone for all of us.

For Mason, because he initiated the touch and pretend play.

For us, because we knew we were going down the right path.

Just the two of us, we can make it we try

2007-09-03T15:55:00.000-05:00

Apologies to Grover Washington fans everywhere... if there are any. (reference to the title, an old song from the late 70's or early 80's ... I can't remember. Heard it on the radio the other day.)

I read somewhere a long time ago, that the divorce rate for married parents of an autistic child is 80%. That statistic boggled my simple mind.

I question where the stats were gathered. While I'm sure there are cases out there where it could be true, there are dozens and dozens of couples that I know, who have children on the spectrum, and all are still married.

But there is no doubt, Autism changes the schematics of the Holy Union between husband and wife.

What I offer in this article is a brief, yet candid insight into my marriage. And in an effort to keep me sleeping in my own bed and not on the lumpy couch, my wife has approved the following blog entry. :)

Autism has a funny way of bringing imperfections to light. Mason isn't the perfect child. He couldn't do those milestones I referred to in previous posts, that other perfect children mastered so easily.

The stress of having a child on the spectrum, brought our marriage imperfections to light as well.

I am a horrible communicator. Rashele, an overcommunicator. Somewhere in there I suppose there is a balance.

Arguments, when they do arise on occassion, can get loud. We've had our share of shouting matches, like any couple. We're always careful to not do it around the kids.

Rashele will use 100 words to illustrate her point, I'll use 10. In my mind I like to think that's because I'm more efficient, but I do recognize that it's a shortcoming that needs work. Writing always comes easier to me as it allows my time to gather my thoughts. When those shouting matches do occur, it can REALLY be a challenge to not go to bed angry. And in those times that we haven't called a truce and played nice before bedtime, one of us finds out how uncomfortable sleeping on the couch can be.

Another challenge is Time. We're always at a disadvantage here, as it's become our most precious commodity that we rarely get to cash in. Between the constant juggling act of school, therapies, play groups, making sure our 2 other typical kids are taken care of, autism really consumes our schedule.

This leaves very little, if any time for each other. And truthfully at the end of the day we collapse from sheer exhaustion when we go to bed. Not long after we fall asleep the nightly wake up calls of Mason start. Usually around 1am, continuing until 5am. (Though lately he's been sleeping better. Still since birth he's only slept all the way thru the night a couple dozen times.) It wasnt until Mason came along that I realized how important sleep was. And the devastating effect it can have on your mood if you're not getting enough.

Thankfully we are very fortunate to have a large family support system minutes away. This does allow us time every couple of weeks to retreat to a quiet dinner somewhere w/out having to overlook a child's menu, or wonder if the lighting, large crowd, or smells will push Mason over the edge. And if we're lucky.. we may even get to take in a movie too.

We'd love to go on weekend trip somewhere nearby, sans offspring. But neither of us are at that point that we could leave without stressing too much about Mason to truly enjoy each other's company. We're not ready. I don't know if our family support system is ready either. They'd be the ones caring for him in our absence. While they all know Mason's challenges, I don't know if they completely understand the hovering that takes place almost all the time.

Despite the challenge, we're in good shape. Our relationship by no means perfect, remains very strong.

That river in Egypt

2007-08-30T17:16:00.000-05:00

I'm backing up a bit, to the day the Pedi Neurologist suspected autism. We left his office, fastened Mason into his car seat and drove home.

I was shocked. I didn't believe it.

Why? I have no clue.

I remember getting emotional about it in the car. To the point that my tear ducts produced a liquid like salty discharge...tears?!?! What the hell?!?! This never happens.

(** last time I had cried was when Michael Jordan had retired......the first time..by retirement #2 and #3, I didn't care anymore.)

I digress..back to the ride home..

I was scared. In my mind I was flashing forward into Mason's future.

What will he turn out like?

Will he have friends?

Will he ever do the foolish things that are considered misdameanors in most states, or have a humorous story about spending the night in jail like his father?

Will he ever grow up to be a sub par, yet better than the average caucasian basketball player like good ole' dad?

Will he ever get married?

Will he ever give me grandkids?

To say that these thoughts don't plague me daily is silly. I do think of these things on an almost daily basis.

Yes, of course he'll do these things I said to myself. He's not autistic. He's just taking things slow. He's the 3rd child. He's like me. Laid back. Soaking it all in......

I was in denial.

What's worse is that I denied that I was in denial.

It's rare that anything "grips" me and shakes me up. I'm, as I stated above, an extremely laid back person. Autism however has gripped me. It's shaken me up.

I want to fix it. I want a cure. I want it yesterday.

I came around pretty quickly and accepted my son's disability. I know a lot of fathers have a hard time with that. Why waste time? I thought to myself, You're not doing anyone, especially your son any favors by doing so.

Thankfully my wife didn't wait for me. She was in control. She was as usual, a whirwind, moving forward arranging state provided services, reading all the cool autism books, googling every known supposed cure known to mankind.

There were a ton of them.

She even found something about curing autism by swimming w/dolphins. ... Oh boy, this is going to be a fun ride. (sarcasm)

School Daze

2007-08-29T09:38:00.001-05:00

This is where Autism has caused the need for creative thinking, balancing, and flexibility.

Mason started his 2nd year of PreK in our school district's TLC program. This is a program specifically designed for kids on the autism spectrum needing assistance w/language skills. Most of the kids in the class have little or no verbal skills.

The teacher/student ratio is small. 3:5
1 teacher, and 2 aides, and 5 kids in the class.
I'd like it to be 1:1 ratio, but for now, I think this is manageable.

Problem #1 - His school is not at our home campus, and is 20 minutes away from our house.

Problem #2 - Claire-Marie attends 2nd grade at a different school. Her start time is the same as Mason's

Problem #3 - Kyler started middle school this year. Ugh. That stresses us out all by itself. I remember middle school. Note to self, continue the pep talks with Kyler.

3 kids
3 different schools

For both Kyler and Claire-Marie, we're too close to their schools for the bus, but too far to walk. Mason is eligible for the bus, but he'd have to be picked up at 7am, spending nearly an hour on the bus since school starts at 8.

We were in a pickle.

Fortunately after the first couple of days we've worked out a schedule for now. Our ever so gracious neighbors allow Claire-Marie to ride to and from school with them. Irony of ironies, our neighbors have also been affected by autism. Their 9 year old son Chris resides firmly on the spectrum. Amazing kid.

Chris' cousin lives next door to us as well and attends the same school as Kyler, so since they're officially "big" kids now, they've elected to ride their bikes to/from school everyday, weather permitting of course.

Learning a few months ago that their son was autistic, we've become good friends. We watch out for each other's kids, trade information on therapies, etc. We'll be having them over for a BBQ soon as a thank you for the rides to and from school this year. They have been a true lifesaver for us.

Back to Mason and the start of school....

In the past couple of weeks prior to school starting back up, I verbally prepped Mason for the inevitable. School.

He had a great year last year. Met almost all of his goals, and showed strong progress in a lot of areas that concerned us. But he loved his summer off. When therapy sessions weren't occurring he commanded the home computer. If a sibling was on when he wanted to play, he'd stand behind them saying "Get Down Claire" or "Get Down Kyler" repeatedly until tired of his repetitive sentences, they'd relent and forfeit the coveted chair allowing him to resume his reign.

School started Monday August 27th.

Day 1 - This day was what we imagined it would be. Some crying and verbal protest when Rashele turned into the school parking lot. All in all it lasted only a few minutes. He soon adapted to his new teacher and new classroom. Fortunately he has a familiar face in the class, the aide Ms Jodi. We love her. She was with him last year, and has a great bond with Mason. He's reluctantly bonded with her. All personal relationships are on Mason's terms and dependent on his mood that morning.

Day 2 - Better than Day 1. No crying. Did his tasks appropriately. Let the teacher/aides know when he needed to go to the bathroom on his own. That was a big step for him. He's learned very quickly how to initiate conversation when it comes to potty time.

Day 3 will be coming to an end shortly. We'll get a break from juggling taxi service for a few hours until the other 2 monsters come home from school.

While many friends of ours with kids on the spectrum have had bad experiences with local school district to provide services, our experience has been a good one. I don't know what we've done right, but we feel we've gotten everything we've asked for. Which in itself is frustrating, as I wonder maybe I'm missing something... maybe we're not asking for the right services....

Autism does this to you... makes you second guess everything.

Even the good stuff.

Just the facts ma'am, just the facts.

2007-08-28T08:35:00.000-05:00

The fact is, Autism is a burden. I can't pretend that it's not. But as burdensome as it is, it's presented us with many good things, and especially with what a very good friend refers to as "Sunshine Moments".

We are relatively young on our journey down this path. In the past 2+ years our eyes have been opened to what so many parents of autistic children have struggled with for years. It's allowed us to forge deep friendships and instantly bond with other parents that share our experiences. It's also allowed us to not take for granted those little successes that often go overlooked with typically developing children. These are the "Sunshine Moments" our good friend, and fellow parent of an autistic son, so eloquently told us about. Where all of a sudden something simple that you, or your child's therapists have struggled to teach your child for months, finally clicked. They get it.

She learned the phrase from another parent.

Whoever thought of it coined it perfectly.

Some background..

Our son Mason, now age 4, was diagnosed with PDD-with autistic tendencies (Pervasive Developmental Disorder) at 19 months of age.

Prior to that dark day, my wife, like Detective Joe Friday, pieced together the clues over the course of many months.

No speech. Barely even a babble or coo. Check.
Poor eye contact. Check.
Interest in spinning objects and eye tracking. Check.
Lack of gross motor skills. Check.
Stimming (repetitive behaviors). Check.

My wife, having a keen mother's intuition, knew it was Autism before we saw a single doctor.

If my wife is anything, she's relentless in seeking information. She can't make an apple pie without first searching thru 1000 recipies to find one that meets her satisfaction. It's annoying, but her methodology works. She makes a damn good apple pie. Her knack for seeking and understanding information lends to her job as a business analyst very well. As a mother, in the case of autism, she was dead on correct.

I remember her calling me on the phone at work. "Look! (as I envisioned her shaking me violently) He doesn't do this, or this, or this, or this!". She narrated to me her checklist of milestones that Mason should've hit long ago. "I think he's autistic" she said.

I didn't get it.

I thought she was overreacting.

My son wasn't autistic. He couldn't possibly be. ..... .. .. could he?

There were more clues, but we only see them now thru that perfect 20/20 hindsight. In fact now, knowing what I know today, I can look back to the day he was born, literally seconds old, and know that he was autistic as he was handed to my wife and I in the delivery room.

He was immediately 'different' than his older sister Claire-Marie. And I'm told, different than my stepson Kyler.

So it was in November 2004, after our officially unoffical diagnosis of PDD with Autistic Tendencies, which was later changed to an official diagnosis of Autism, that we started our journey into the foggy unknown.