YEAH!

Amanda went to our local fair this week with her school. While there she was asked if she would like to help change the tire on a go-kart. When you ask Amanda if she wants to do something and she does she always answers with a loud "YEAH!"

Last night she sat on the couch and imitated the sound of the impact wrench. It took it minute or two for me to figure out what was going on but I was relieved when I did. She has started burping on purpose and I was concerned this noise was going to enter into her vocabulary.

Her latest activity is she will be a cast member of the local youth theatre's performance of "A Christmas Carol"

She has been in three school plays and thinks this will be fun. She is venturing out more and that is enjoyable for all of us.

Something on my mind

I have a topic on my mind that has dominated my thinking the past few weeks and it can be summed up like this: CRAP is CRAP

What I mean by that blunt statement is this; do not deny people their pain.  I believe the worst thing that I have ever been told or have ever heard anyone say to anyone else who is having a hard time with a personal issue is: "It could be worse."

Everyone is aware that things can always be worse, that is not the point I am trying to make.  What I am say is this.

Imagine you are about to be served a meal at a restaurant and the food is brought out and placed before you and your family or date or whomever you care to share a nice meal with.  The food is everything you want it to be and then all of the sudden a squirrel that is hanging from the rafters poops onto your meal.  The food is ruined by this small amount of fecal matter, as is the outing.

Now the manager of the restaurant is demanding that you pay for the meal.

Customer: I'm not paying for this meal

Manager: But why?

Customer: Because a squirrel crapped on it

Manager: But it was just a squirrel.  It's not like it was a buffalo

Customer: No, crap is crap.

So what I'm saying in my round about way is this, when a person has received bad news, don't trivialize it by saying it could be worse because we all know that is true.  Don't be a squirrel or a buffalo, be a human being.

Turn about

As you know Tina will not save me from an attacking frog.  Well she learned something very important about me the other day.

I was sitting in the living room a couple of evenings ago playing Words With Friends on my iPhone.  This is one of my favorite aps and games and it keeps me occupied in a positive manner.

While sitting there minding my own business trying to think of a four letter word that ends in either C or J Tina screams from our master bathroom.  It's a blood curdling scream that conveys pure terror.  So naturally I think it is either a zombie, Jason Vorhees, or a frog.  I pause the baseball game that is supplying background noise for my scrabble like game and then charge to the bathroom at a light jog.  Tina and Amanda are on on side of the bathroom which measures twenty feet across and are pointing towards the other side.  I don't see the walking dead or a hockey masked murderer so I look down and see...

Yes, that blur is the worlds smallest lizard.   I had my iPhone with me so I was able to capture the creature with my camera.

I then put it in some tissue and took it outside and released it to the wild.  Tina and Amanda were safe and I was able to return to my games.

Now, I'm not saying I'm better than my wife, because I'm not.  I'm just saying that when it comes to small little creatures you're better off with me than with her.

No need to panic

I answered my phone yesterday afternoon from a number I did not recognize.  I love caller ID, but have you ever had an anxiety rush from not recognizing the number?  That doesn't happen to me, but I'm just wondering about you..

Anyway, I answer the phone and of course say "Hello."

The person on the other phone identifies herself as Agent Britney.

So now I'm trying to remember what I could have done that would require an agent to contact me.  Nothing comes to mind  for the last few years but then again I am over forty and starting to loose years of my life, especially the ones where New Orleans was part of my sales territory.  I don't panic but start to form an alibi just in case.

Then Agent Britney tells me she is from the Geek Squad and my Blu-Ray player has been diagnoised as dead.  I'm cool with that because now I get to go pick up a new one from Best Buy.  So, I get my trusty sidekick, AKA Amanda, and off we go.

When I bought this player last year it cost $249.  I am allowed to pick out any player that costs less than that.  Funny thing about it is Blu-ray players have gone down on price so much that I get one better than the one I'm replacing.  I telling Amanda that very piece of economic windfall and we have to high five in Best Buy.  She likes it when Daddy has things go his way.

The only bad thing about this is, I think Netflix had to get rid of the last five movies I watched because I reported them as damaged.

School and the end of summer vacation

School has started and Amanda is loving it almost as much as Tina and I.  Her homeroom class is small this year and we hope it can stay that way.  During the day Amanda attends a lot of other classes and activities.  Her favorite is art followed by adaptive PE and dance.

She also has therapy sessions throughout the week and is helping in the front office, so she is constantly on the move.  A major benefit to all of this mobility at school is how relaxed she is in the evening.  She just likes sit and visit or play a game of Uno instead of committing 100% to dominating her known universe.  It makes for a nice evening.  Then by 8:00 is actually demanding to go to bed.  She is asleep by 8:30 and then Tina and I have an opportunity to watch a movie, read or whatever.  I just love school.

New Ride

GeoTagged, [N33.42982, E94.11875]

I have lived in Texas for 34 years, which is most of my life. But you have to understand I'm not the typical east Texas male citizen. I don't hunt anything larger than a noisy cricket that keeps me awake, I don't worship UT football, I don't consider macaroni and cheese a vegetable and until very recently I have never owned a pickup.

This last point is important. Three weeks ago I traded off my beloved Malibu LTZ which was sneaky fast and fun, for a 2010 Crew cab Dodge Ram pickup. Why did I do this when I haven't even worn my boots in ten years? Well it is simple really. If I am ever to take my family with me beyond the borders of Texarkana I need to be able to take our necessities with us.

We aren't just a special needs family, we're a special needs a lot family.

Amanda's wheelchair and my golf clubs require more than even a Tahoe can accommodate. So I joined the Dodge revolution

This monster has nearly 400 horsepower, independent front suspension, rollout bed cover with locking tailgate and more interior room than my parent's old Buick Estate wagon.

So we've made our first road trip in it last week and it was the perfect vehicle. For the first time in ages we had everything we needed including space. When you are as together as much as we are personal space is very important. The front seats are even divided by a console with shifter.

So I'll have this vehicle for a while as we have discovered how much Amanda likes to travel.

I must admit, she's pretty dang smart

We went to the bench rather late this evening and were promptly met by mosquitoes.  I told Amanda we should go back in the house but she had a better idea.  "Back porch.  Use the fan and no bugs."  The kid is a genius.

While on the back porch I decided to follow one of the wild rabbits around the yard.  I was within four feet of him for ten minutes as I followed him all over the yard.  I only stopped because Amanda was calling me back to the patio.  That was a lot of fun.

Disney like

In the backyard tonight we had two young rabbits and a squirrel. We've had rabbits for years because my house is completely encircled by concrete roads and the backyard is fenced. It keeps the predators at bay.

It is quite peaceful.

Keeping it fresh

What I think is so great about being in a life long committed relationship, aka marriage, is that you never stop learning new things about your spouse.  Just last week I learned something new.

Years ago we moved into a new house.  Tina and I were setting things up in the kitchen when I heard a noise come from one of the bedrooms.  Being curious as to what it was I went back to check it out.  It was nothing more than a sound that came from the neighbor's air conditionor, but when I turned around there was Tina standing right behind me with a claw hammer.  I said, "What are you doing?"

My sweet young wife told me she was there to protect me.  I have to tell you, that made me feel really good and for the last seventeen years I have always felt like Tina was on my side. 

Now fast forward to last week.  Tina, Amanda and I are splashing around in the pool on a hot summer's day when I feel something hit my ear.  I reach up and start feeling around my head and ask Tina if she saw something.  She said she has seen a dragonfly buzzing around.  I turn my head and she screams and runs, splashes, swims and eventually leaps out of the pool.  I reach up to my ear and grab a small frog.  My response is a little different than Tina's.  I show the frog to Amanda and then toss it into the bushes.

Meanwhile, Tina is panting and pointing and telling me to check the rest of the pool for more frogs.

So what I discovered is this: if I am attacked by a frog I had better be able to defend myself because Tina will just let it eat me. 

Wheels on the chair go round and round

We just got back from Chicago and it was a great trip.  This was our first trip with Amanda's new wheelchair and it worked even better than we had hoped.  For starters, we were moved from row 29 to the bulkhead on both flights between DFW and O'Hare.  Score one for Amanda.

Second, getting through the airports is a breeze when you aren't dragging a child or worrying if they have wandered off or gotten run over in a stampede.  And finally, the best part is, Amanda was able to participate all day long.

We went to the Navy Pier where I learned that steep ramps need to be taken in reverse.  Amanda's eyes were as big as the Ferris Wheel when came sliding to a stop at the bottom.

Amanda covered a 100,000 square foot convention floor in three hours collecting all of the give aways from other companies.  Between her and my 19 year old beauty queen niece I think they even got somebody's laptop.

On Monday I had to work so Tina, my sister and her daughter took Amanda shopping.  I was back at the hotel before they were.  When I opened the door for Tina at almost 5 pm both she and Amanda had the most satisfied looks on their faces.  They just kept going all day and loved it.  I took the backpack from Tina and stupid me, I thought it was the same as when they left in the morning and would weigh about 5 pounds.  Nope, men climb Kilimanjaro with a lighter pack.

I asked Tina where they went.  She said it was easier to explain that they didn't go to Eddie Bauer.

The the wheelchair was a huge success.

And just to point out how helpful it was.  The next day when we got home I took Amanda with me to three places as her sighted guide.  She tripped over two thresh holds and took five minutes to get through a small store.

So all long distance journeys will have the chair, particularly when we go out of town.

I wear a lot of hats

It is a known fact that I like to wear hats.  I've worn hundreds if not thousands of them over the past 41 years.  My cub scout hat, boy scout hats, baseball hats, school hats - even schools I didn't even attend like  The University of California Bears.  One of my favorites was from my early teen years.  It was a Coors Light hat my sister gave me.  It made me look like a Greek fisherman minus the tan.  I kept that hat from the time I was thirteen to twenty five.  At twenty five Tina cleaned out my closet and threw it away because she thought it was ugly.  But I digress.

Lately I have been wearing a black and white Nike golf hat. It can be seen on a blog entry  where Amanda was playing softball.  But I have been wearing it to the gym and to play golf and even to mow the yard so it has gotten a bit used.  So this weekend at the Texas State Special Olympics I bought another hat.  It's blue and made for summer and is very comfortable. Since I bought it at the Special Olympics it says Texas Special Olympics on it.  It only makes sense.

So on our way home Saturday we stopped at a Starbucks to bring my level of caffeine up to a higher octane.  Tina took Amanda to the bathroom while I ordered our drinks.  The young guy behind the counter and I had the following exchange:

Young guy: I see by your hat you must be a nice person

Me after taking off my hat and looking at it to see what he was talking about: Well, my daughter thinks so.  The rest of the world has opinions that span the spectrum of all personality traits.  It just depends on the circumstances at the time. (Seriously, that is what I said)

Young guy: Your daughter likes you, that's enough.

Me: Thanks

I tipped him two bucks for making me feel better.  Between that and the Venti Vanilla Latte' I was set.

By the way, Amanda had a great time at the Olympics.  She was the youngest competitor in her events but she tried as hard as she could and was awarded a bronze medal for the 50 meter dash.  She runs as hard as she can and never gives up and it makes me so proud every
time I see try.

We didn't attend the opening ceremonies because it was just too hot.  Amanda was a little disappointed because she wanted to see all the policemen that would be there.  At dinner we ran into five officers who posed for a picture with her, so she was thrilled.

What happened to Spring?

Don't ask me how, but the school year is over.  Amanda has her last day on Wednesday.  Thursday we go to the Texas State Special Olympics so she doesn't even have to attend the official last day of school.  She loves the idea.

We have several trips planned this summer and the pool is cleaned, so we should be kept pretty busy until August 23.  Yes, I'm counting down to the first day of school like a kid does for Christmas, but every parent does that.

Like Sands Through The Hour Glass

So I turned 41 yesterday.  It was bound to happen and I'm glad it did.  I celebrated by initiating a merger between my local sheltered workshop and the area Easter Seals affiliates.  I have come a long way in 20 years when I went in and bought a bottle of Crown Royal with my real ID.  Two months later I bought Amanda's mama an engagement ring.  Progress is what it is but ain't what it used to be.

Parents just do understand

It was Friday night at our house and dinner guests had just left.  It had been a great evening with fajitas, birthday cake and the proper assortment of beverages.

I was getting ready for bed while Tina was giving Amanda her antibiotic that she had been prescribed that day for an ear infection.  The sweet child had been a real trooper about dinner, mostly because our guests were best friends.

I'm walking down the hall when I hear a sound no parent wants to hear.  A bowel movement that could go through a screen door.  Tina is saying,  "OK, OK, OK.  Just stop honey, just stop."  She isn't upset or grossed out.  But Amanda is wearing new Nikes and standing on the new rug in the kitchen.

We clean her up quickly and I take her back to the bathroom when I hear Tina say, "Ah man, Amanda got gum on her shoe."

So what I'm saying is this, after twelve years of being a parent, a child dropping a cow paddy in the kitchen doesn't bother us.  That is why we have tile and a couple boxes of latex gloves in the house.  But nobody, and I mean nobody, wants to scrap gum of the bottom of a shoe.

MVP

This is a picture of Amanda holding her MVP game ball from tonight's Challenger league game.  As you can see she is VERY proud.

I always say that her games are the best hour of the week and this one will be the best game of the year I'm sure.

Our little team has so much fun.  The young woman playing first base caught a pop up for the first out of the game.  In our league, that is a huge deal.  Then our short stop caught one.  The third baseman threw out a runner at first and it was a rare three up and three down inning

The opposing team had nine infielders and their helpers.  It looked like a marching band had lined baselines between 1st and second and second and third.  Amanda hit the ball too well and was thrown out at first.  When I told her she was out she gave me her, "Out, ah crap!"

Our team still scored four runs that inning.

The second inning Amanda and I made a play in the out field.  I scoped up a grounder and handed it to her.  She threw it in the ten feet to second base.

She got a hit in the bottom of the second.  The next batter advanced us to second base.  But the batter after that hit the ball far enough where Amanda did something she has never done before.  She scored from second base.

The top of the third we were playing deep left field, a very good player hit the ball almost to to the fence.  I caught it out of instinct, he is safe because helpers don't make outs.  But Amanda took the ball into the in field and held the runner to a double.

The spirit of the challenger league happened then.  We moved up to play shallow outfield.  A friend of ours on the other team who uses a reverse walker and is helped by both her parents was thrown out at second.  Our short stop who is actually fast enough to be on a varsity track team said he was so sorry he did that.  She told him it was okay, that is how the game is played.

In the bottom of the third, Amanda got another hit.  The next batter advanced us to second.  And the batter after that repeated his hit from before and we scored.  Amanda couldn't believe it, she said it was "AWESOME!"

After the game she high fived everyone on both teams and the umpire gave her the game ball.

Now that is softball.

Softball pics

Now that is softball.

Sweet Thursday - NOT!!!!!!!!!!!!!!

It's Friday, and this Friday is so much better than Thursday.  Yesterday was one of those days where being an adult was just plain hard.

It started right out of the blocks with my Keurig Coffee Maker not working.  So instantly I am chemically imbalanced.  In spite of the caffine deficit Tina and I were still able to get Amanda ready and delivered to school.  Thank goodness for the close proximety because I wouldn't have made it much further than I did.

After dropping her off I went to McDonalds and bought two large black coffees and an egg McMuffin.  I was starving and snarfed it on the drive home.  At the house I gave Tina her coffee and I had mine.  The chocolate carmel creamer was good enough, but I like mixing it with the German Chocolate Cake flavored coffee.    I showevered and dressed but was too tired to shave.  Then I had to find my flash drive.  I had a few files on it that I didn't back up the night before and I needed them.  I know I should back up daily, and most of the time I do, but this time I didn't and that is why I couldn't find my flash drive.

I looked all over the house for it, lost my coffee twice trying to find it, and became some sort of contorsonist looking in my car for the thing.  I did not find it.

I had posted on Facebook that I was a quart low on my coffee level.  People were saying they wanted to go home and were putting out advice on how to survive the coming calamity, it was embaressing, but at least I now know who fears me.

After my meeting I went home and called Keurig.  I spoke with technical support for twenty minutes.  After everything failed they offered to sell me a knew one at $130.  When they said they couldn't have it to me in an hour I said I would handle it on my own.  By that I mean, Tina bought us a new one after lunch.

It was after said lunch where I ate everything I could get my hands on that I returned home and looked through my house one more time for the flashdrive.  I was alone so the rising tide of profanities that was spewing out of mouth only injured the ficus tree in the corner.  Tina says the plant is a fake so it should be okay.

I looked on my dresser for the fifth time and in the charger station one more time and there it was in the shadow of a corner on its side where I could only see the black edge.  My attitude instantly improved as did my language.

The coffee level was still low but I had another cup at work and hoped for the best.  I stayed sequestered in my office the remainder of the afternoon because I knew I just wasn't quite level.

The evening went well.  Amanda and I watched a couple across the street chasing their 2 year old.  The mom asked if we wanted an extra child.  I said no thank you.  Amanda was blunter than that, "NO NEED WILD CHILD!"

If she would have seen her daddy at one o'clock in the afternoon  she would have said, "NO NEED CRAZY DADDY!"

This morning I had GREAT coffee and a lot it.  A good workout and a nice day at the office.  Plus, everything is backed up.

A great couple of days

We're back form the Area Special Olympics.  To say it was a great time is to say Christmas and Thanksgiving are kind of fun.  This is better than both.

Amanda has been practicing her two events: the fifty meter dash and the tennis ball throw and the work paid off.

What I thought was so great was how serious she was about the competition.  She stretched her arms and legs and even practiced her throwing motion.  She placed for a silver medal with her personal best throw of 22 feet.
She loved receiving the medal, but more importantly, she loved that a policeman gave it to her.  She loves cops.

Later that evening she had her fifty meter dash.  She did an outstanding job.  She pumped her arms and kept in her lane and ran all the way to the end.

After the race she was walked by a volunteer over to the awards tent.  The girl, I believe to be a high school student, spent about a minute and a half with Amanda and then made a point to tells us, "She is such a sweet heart.  You are so blessed."  That made my trip.

The next day was the actual opening ceremony.  Amanda found a friend on the team who held her hand and walked around the track with her.  We sat in the stands and watched with pride.

The national anthem was sung by a special needs middle school boy who gave it more than his all.  Half way through the nearly four minute version of the Star Spangle Banner I looked over at Tina who was just balling her eyes out.  She said, "Thats the best I ever heard."

We spent the rest of the morning watching friends compete and then headed home about one.  Amanda was so worn out she fell asleep in the car.  The last time that happened was 2005.  She went to bed at 8:30 last night and slept twelve hours, only because I woke her up for church.

We have two more Special Olympics this month.  One is for the county and the second is for state.  this will be our first trip to state, so we are very excited about it.

Pretty good start to the day

There are parts of my life that go easier than they should, or at least a lot easier than they used to.  Getting Amanda ready for school is at the top of the list.

It used to be the equivalent of putting a feral baboon in children's clothes and hoping for the bleeding from the scratches and bites to stop before I went to work.  It was simply the worst part of the day and possibly my life.

But now, well time heals all wounds.  She gets up in the morning and hugs me.  Says she is going to have a "Good day" and gets ready without too much difficulty.  I don't do her hair because I haven't the first idea how to do it so that battle is a Tina story.  Tina doesn't blog, write letters or essays so you will just have to take my word for it that the battles used to be epic.  But Amanda is even good for that now.

Now here is the best part of the whole morning task.  Amanda's school is a half mile from our house.  We hear one song in the morning and I drop her off right in front of her classroom to her teacher.  I'm home before Tina knows I was gone.

We have one more year at this school before I have to drive across to the middle school. 

SHHHHHHHHHHHHHHHH

I am hyper sensitive to noise. I cannot stand tapping, clicking, dripping, thumps, grinds, tinkling, crunching, creaking, smacking, slurping, ticking or tocking. I also do not like to hear ANYTHING when I'm concentrating other than my own thoughts or background music of my own choosing. I do not want to hear conversations, bits of conversations, a TV show, a talk radio program, music that I did not choose, sneezing, coughing, throat clearing, laughing, sniffling, or snapping.

At times this sensitivity makes me very unpopular at work, at home or any other place I may be. People do tend to like it when I close my door and wear a set of headphones with my Pandora jazz station playing as I work on a bid or letter.

So because karma has a cruel streak about as wide as the Mississippi River during a spring flood, Amanda does not have what you would call an inside voice. It has taken her years to develope speech equal to a four year old, and she now speaks loud and proud.

I will tell her to use her in side voice and she will whisper, "ok." Not thirty seconds later she will sound like a drunk in the audience at a club yelling "FREEBIRD!" to the band.

My wife, who happens to be a rather noisy person, at least by my standards, has noticed it too. She also believes it is my fault simply because I complain too much about noise in general.

job descriptions

While getting Amanda ready for school this morning I commented on how tall she was getting. She is now almost 4'10" so I said, "I think you're tall enough to change the light bulbs in the house."

Her reply was, "not my job."

So I asked her, "Well, what is your job around here?"

And she promptly said, "Look cute."

Not what I planned

Saturday morning Amanda asked, "What do today?" I had a plan, I told her, "I'm not doing anything but watching the Masters Golf Tournament."

Well, two days, twelve contractor bags, 6 bags of mulch, a gallon of lawnmower gas and about 30 yards of weedeater cord I heard the Phil Mickelson won the tournament. But on the up side, the yard looks great.,

I also learned a few things this weekend. I like that I am continuing to grow intellectually, it makes me feel better as a person. What I learned was this: a cheap bottle of red wine, and I do mean cheap, has a bottle cap that can be broken if over tightened. Next I learned that to get all of the red wine cleaned up out of the fridge, said fridge must be dismantled. I also learned to not only take the draws and shelves out of the fridge, I learned to put them back in.

So, all in all, it was a good, yet exhausting weekend.

Gold isn't free

Training for the Special Olympics

Hello out there

When searching for blogs about special needs parenting I was surprised that I could not find another father who blogs about this subject.

Granted not all of my blog is about my SN daughter, but for the most part it is. I'm not organized enough to publish multiple blogs so the hodgepodge that is Thoughts From The Bench is comprised of most of my own mental stew. At least the parts that are fit to print.

But, if anyone knows of such a blog I would appreciate a link. Sometimes it's tough being the only guy in the room.

No group today

I really wanted group therapy today and by group therapy I mean golf. But it's Wednesday in east Texas so it's raining. In fact as I write this I just received an email from the weather channel telling me there is a storm warning until 4 PM. Yep, that is just the way it goes.

I need an enemy other than the weather, something like a large angry toothless possum.

I have a question

For months now I have been getting up at 12:30 to take Amanda to the bathroom. This has worked well and is allowing her more dry nights than every before. It also lets her sleep later in the morning because she is more comfortable.

But lately I have been working on a couple of projects in the evening. And yes, one of them is Call of Duty. The other is a writing project that has kind of mushroomed into keyboard therapy for me. So I've been staying up after Tina goes to bed. At midnight I take Amanda to the bathroom. Now the mystery is this, how come when I take her to the bathroom at 12:30 her pull up is dry and when I take her to bed at midnight the past four nights she is soaked?

And before you blame the noise from the video game, know that I play it on mute. It's more difficult but I have proven up to the challenge. Seriously, if you play Call of Duty online with a Wii and you have to go up against Johnnyc, you are in big trouble.

My own theory is that Amanda just likes to mess with me. What do you think?

Please hold for Amanda

Today I got a call from Amanda. Yes, that is correct, Amanda. She has been learning to speak on the phone and today she had something very important to tell me. After months of stress and effort, she has finished with the Texas state educational assessment test, alternative version.

Tina said she was literally dancing in the car. This test has caused Amanda a great deal of self imposed stress. She knows how important it is for the mainstream students to pass it and she just knew it was equally important for her. She also knows she has a hard time counting to ten because she doesn't say the number seven. The days of the week are difficult because she doesn't acknowledge the existence of thursday. But now the test is over and she is one happy kid.

It is my hope that her good attitude about this continues for the rest of the school year. Sadly, we are looking at school being finished in just seven weeks.

The one thing I am wanting this summer is near drought conditions. Last summer was so wet we hardly had a chance to enjoy the pool. I would prefer to be a near amphibian this year.

I'm much better now

So yesterday was not one of my better days. But what a difference an evening of Challenger League bowling, time with Tina, a good night's sleep and an hour of heavy lifting at the gym can do. Body and soul are recharged.

I don't get down on my situation very often, but I attribute yesterday's malaise to the ARD meeting. The meeting itself went well, the entire staff is on Amanda's side and do right by us. But even after a great party there is the residual hangover. yesterday was just that.

Post ARD

We had her ARD meeting last week. There were several test results we had to review, the least favorite being the IQ test. While the score was in line with what she has tested to in the past, it is still so painful to see on paper. All of what it means was laid before me, how our world will hardly deviate from its course, how I must continue to take care of myself so I can take care of my child for years after other parents are complaining of the empty nest. How I will never have grandchildren to spoil or will have to pick my own nursing home and all the things in between.

Yes, I joke that I am fortunate that I don't have to save for college or a wedding, but that is only the price of "normal." Sometimes I hate that has been denied her and me.

To quote the recently honored Dennis Hopper, "This is some heavy shit man." I think he has said that in most of his movies.

I was reading one of my favorite blogs, To The Max, and posted on it was the Parents Bill of Rights comprised by its author. I'm going to repost it here with a few coments, I agree with so much of it:

* We have the right to expect our kids to be seen for who they are as individuals, not as labels or diagnoses.

* We have a right to trust our instincts about our kids and realize that experts don't always know best.

* We have a right to ignore the remarks, questions and stares and not give explanations or excuses for why our children are the way they are. - Tina says I have murder eyes that shield me from most people. She says she wants them too.

* We have a right to choose alternative therapies for our kids.

* We have a right to roll our eyes straight out of our heads when we encounter certain mothers who brag nonstop that their kids are the smartest students/best athletes ever. - It's great your child is so amazing, pardon me while I drag mine out of the store during a meltdown

* We have a right to wonder “What if…” every so often. - YES WE DO and that is just fine

* We have a right to play aimlessly with our children. Not for therapeutic or educational purposes—just for fun. - She is an awesome playmate, channelling my inner child fixes most things

* We have a right to blast Bruce Springsteen/Tom Petty/Any Rocker, down a glass of Pinot Grigio, get a pedicure, go out with the girls or do all of the aforementioned at once if that's what it takes to avoid burnout. - OK, I don't drink light wine, but believe me, the white cup in my hand doesn't have apple juice in it.

* We have a right to react to people’s ignorance in whatever way we feel necessary. - that would be the murder eyes thing again, coupled with my smart ass attitude I don't suffer repeat offenders

* We have a right to not always have our child be the poster child for his/her disability and some days be just a child. - A-MAN!

* We have a right to go through the grieving process and realize we may never quite be "over it." - it's not for ourselves that parent's grieve

* We have the right to give our kids chores. Even better if they can learn to make breakfast in bed for us. - she is a great sweeper and laundry folder

* We have a right to stretch the truth when we fail to do the exercises the therapist asked us to do this week because we were too darn tired or overwhelmed.

* We have a right to have yet more Pinot Grigio. - or what ever

* We have a right to fire any doctor or therapist who's negative, unsupportive or who generally says suck-y things. - I've done that

* We have a right to tell family and friends that everything may not be OK—at least not how they mean it, anyway.

* We have a right to hope for an empty playground so we don’t have to look into another child’s eyes and answer the question, “What’s wrong with him?”

* We have a right to bawl on the way back from the playground, the birthday party, the mall or anyplace where our children’s challenges become glaringly obvious in the face of all the other kids doing their typical-development things. - tough days just happen

* We have the right to give our children consequences for their behavior. They may be “special” but they can still be a royal pain in the ass.

* We have a right to take a break from Googling therapies, procedures, medicine and treatments for our kids to research upcoming concerts, exotic teas or anything not related to our children’s disabilities.

* We have a right to talk about how great our kids are when people don’t get it.

* We have the right to not always behave as inspirational icons who never complain or gripe about the sometimes awful realities of raising a child with special needs. - as you can tell at this moment, sometimes it's just plain hard

* We have a right to expect quality services for our children not just when they’re infants, preschoolers and elementary school age, but when they’re in older grades and adults, too.

* We have a right to adequate funding for those services and to not have to kick, scream or endure a wait for them.

* We have a right to get tired of people saying, as they give that sympathy stare, "I don't know how you do it." - it's as simple as this, failure is not an option

* We have a right to wish that sometimes things could be easier. - yes we do

* We have a right to cheer like crazy anytime our children amaze us—or weep like lunatics.

* We have a right to push, push and push some more to make sure our children are treated fairly by the world.

Compiled in honor of my little boy, Max, and all of our beautiful children on June 17, 2009.

A step in the right direction

This morning's meltdown was brought to my home by a combination of high tech and fantasy.

Amanda was determined to take her "phone" to school this morning. Her latest phone is my old Blackberry, less battery and sim card. We explained to her that she wasn't allowed to take a cellphone to school. her answer was, "I... Don't...Care...Take...I...Anyway!!!!!!!!!!!!!"

This was the first time I ever heard her use the word, "anyway." I don't think I like it.

We continued to explain to her that she just couldn't do it. These meltdowns have lasted for hours, but today she pulled it back together in about 10 minutes. She said, "OK, I understand."

Now, I don't know if she held it together all day, or if the whole class was punished by a redheaded Tasmanian Devil. I was pressed by time to get to a meeting at work and then to get to a luncheon with a customer to hear the President of the St. Louis Federal Reserve Bank speak.

The current economic crisis is much easier to comprehend than the combination of my daughter's imagination and spontaneous desires.

I just hope the day went well for her and all involved.

Some hours later............

Well, it would appear that Amanda conquered her inner hulk and had a good day. I told her I was proud of her and she said, "Good choices." It gives me hope.

No comfort from the food of choice

Anyone who knew me in my teenage years would know that I was truly addicted to Chef Boyardee Ravioli. That stuff was like crack to me. I would eat a can every other day or even 5 days out of 7.

It was so bad, that when I got married the groomsmen gave Tina a case of the stuff so she wouldn't have to cook for the first couple weeks of our marriage.

When I started traveling a lot for work, I would eat a can on the weekend while Tina was at work. It was indeed my comfort food.

But, when Amanda was born in March of 1998 she was kept in the hospital for 6 weeks. We spent as many hours as possible at the hospital, but we eventually had to go home. It was about the 4th week when I was at home in the mid afternoon after being relieved by Tina. I came home, to any empty house, a closed nursery door, and a heart that was breaking. I popped a can, heated it up on the stove, put it in a bowl. Something I had done thousand times before, too many times really. The first bite didn't help nor the second. I scraped the rest in the sink and washed it away and haven't had any Chef Boyardee product since. Early April will be twelve years.

Even just a slice is nice

Amanda has been having to keep track of the weather for a school project. She does this at school during the week and then I help her over the weekend. She isn't really interested in dew points, barometric pressure, El Nino, or other such variances. What Amanda really wants to know is today a purple coat day or a pink coat day?

Her purple coat is a down coat and keeps her very warm. Her pink coat is a lighter material and is designed for days in the 50's. When you are 11, that is what matters. But for school we get a little more accurate.

This morning I was dropping her off at school and she checked her backpack. I heard, "Uh oh! No homework." I told her we would bring it up to school when Tina picked her up this afternoon and then I drove on to the gym.

After my workout I arrived home and Tina told me something I have never heard before, "Amanda called." Amanda never talks on the phone, but this is something that she has been working on with her teachers.

I asked what about. Tina does a perfect Amanda impersonation, "Hey Mama! Forgot homework." The school is less than half a mile from our house and Tina drove up the sheet with our observations on it. She said Amanda was beaming proud and so was Tina. It was a slice of normal that we seldom get to see. It was nice.

Some things concern me

So last night I'm getting ready for bed and I look at myself in the mirror and I get concerned with what I see. I immediately go to Tina and ask what I think is a very important and serious question, "Do you think my head is still growing?"

At first I thought I had killed her. She sucked in so much air to laugh at me that she started to choke. When she gained control, she replied in a concerned toned, "What the hell is wrong with you?"

I said, "It just looks like my head is bigger than it was a couple of weeks ago."

She gave me the following reply. "You have a big head, but I don't think it is bigger than it was, but that is ok because you have a thick neck and your shoulders and arms are big too. If you had arms like your brother with your head you would look like a freak."

Then I said, "Well, it's just that I remember seeing Hamlet, and the scene where Hamlet holds Yorick's skull in his hand would be played out like this should they use mine.
Hamlet drags a skull on stage in a wagon, "Alas, poor John, I knew him well. And he had a really big head, kind of like Shrek."

This got me another, "what the hell is wrong with you?" and that was the end of that and we watched LOST.

Just to be safe, I went and got a haircut this morning.

She saw enough

Sunday afternoon I was on the couch watching the Winter Olympics. It is only once every four years that I get to watch the Nordic Combined event and I wanted to enjoy it. For those of you who don't know what Nordic Combined is, it is a duel event. In the morning is ski jumping and in the afternoon is cross country skiing. I don't begin to understand the elements of ski jumping judging. There is so much more to it than just how far someone can fly and land in one piece.

Amanda sat beside me and asked what I was doing. I told her that the Olympics were on and they were fun to watch. She stared at the TV in horror and after seeing a German fly through the air, she quickly turned off the TV. I took the remote and turned it back on. She turned it off. I turned it back on and told her to stop it. I swear I am not taking a blogger's license with what she said next, "Can't do that special Olympics. I get killed."

Oh my lord, I had to reassure that won't be an event this this year. And, even if it were we wouldn't let her do it.

Mr. Mom

It's Sunday, and at our house that means pancakes. I work the griddle and flip the pancakes, Amanda pours the mix, the milk, and the oil and then mixes them with prejudice and violence. I also crack the eggs because Amanda is pretty heavy handed and that would make our pancakes a little too crunchy for our liking.

Amanda helps with most tasks around the house, in her own way of course. I do a lot of the ironing for the three of us. I play music on the Ipod and Amanda hands me hangers. Yesterday she discovered Beethoven, but normally I play smooth jazz on Slacker Radio. It doesn't take much to do ironing, especially with the new Shark iron we bought a few weeks ago. So it is a good time to visit as well as get things done. Yesterday I pressed 6 pair of paints and 7 shirts, this morning it was just 3 shirts. That should hold us for the week.

Amanda has also been know to help with the dishes. It is a little unsettling when she does this because we have to make sure all of the knives are put away before she dives into the project.

Yesterday I was cleaning the gutters, and as you can see, weekends are pretty busy around here, and Amanda brought me a big glass of gatorade. How she managed to bend a straw 7 different ways I will never know, but it was a very nice gesture.

Tina and Amanda re off buying baby clothes for Amanda's twins. She is in the mood to be a little mommy these days because of all the new babies that keep showing up, so she and Tina brought Bart and Lisa out of the closet. Yes, I had a major roll in naming the baby dolls.

I have to stop this blog now. The Colts and Jets are playing, and despite the fact that I am a Mr. Mom on the weekend, I do love football.

My wife

I seldom write about my wife on my blog for the simple reason, to describe her is beyond my abilities. But let me tell you just a little something about how fortunate I am.

A friend of ours had twin girls just over two months ago. Throughout the summer and fall of our friend's pregnancy Tina was there for her. She drove her to Little Rock and Shreveport to see specialists. She cleaned her home and helped her organize and prepare for the babies. She worked as much on this family as our own.

Now the babies are here and they are quite cute as most babies are. One is smaller than the other. A is bigger than G, and while most everyone is drawn to the loud round faced A, Tina is smitten with this little baby G.

G was twice the weight that Amanda was at birth and not any longer, but even still she scared a lot of people because she was just so small. Tina wasn't scared in the least. She held this tiny child as naturally as pediatric nurse. When Tina said that the baby was having stomach trouble, people took notice, when Tina said don't worry, people relaxed.

This morning Tina was out the door with our friend to help her get the babies their shots. Tina does this with a smile on her face and love in her heart. She is kindness.

X-man unmasked

We were at my parent's house for dinner the other night and Mom's dachshund, the world's smallest hell hound, was barking. The sound of that animal just shoots right through my skull like a barbed spear. Tina spotted the look on my face, the look that says, "I can end this." She quickly pointed out to everyone at the table that I was about to snap. She knew that would calm me down because she just knows me. She then went on about how high pitched rhythmic noises drive me nuts.

She told stories about me battling with ceiling fan chains in the middle of the night and her father tapping a coffee cup while I was driving. I threw the cup out the window.

Then she told the family about the biggest offender:our microwave. She told them how I turn it off with 1 second to spare. But in my defense it beeps 4 times in 10 seconds. Each beep is pain in audible form. I turn it off for the sake of my sanity.

Then she popped off, "He even wakes up before his alarm so he won't have to hear it."

So much for being an X-man.

Don't care for the butterflies

I'm in Indianapolis tonight, Louisville, KY last night. My travel these days usually involves weekends, but since it's not like the old days I'm ok with it. I did my presentation for a customer's sales meeting and will be home tomorrow for Amanda's bowling night, which matters most.

Funny thing about travel. I always get the best rooms at the best rates when I'm only here for a night. When I have 3 days or more at a location I might as well be in my tool shed behind my house. But tonight, I have a suite at the Marriott in downtown Indy at a cheaper price than a Fairfield Inn by the airport. You just have to know who to talk talk too in this kind of situation, and my area salesman took great care of me on this trip. I'm kind of reminded of Mel Brooks from History of the World as Louis XVI, "It's good to be the king."

Anyway, to the airport in the A.M. and then home. It is one of the downsides of living in TXK, if we were in the DFW area or still in Houston, I would be home tonight. Of course there is the whole butterfly effect. If I never would have moved to TXK would I have Amanda? I can't imagine my life without her, so to hell with the butterflies, I'll be home tomorrow.

Sometimes I wonder

There are days where I wonder if I'm missing something because I'm on a different path. Being a parent of a special needs child really does make me a special needs parent.

Last night I watched the video of the Christmas play that Amanda was in last month. The school does a nice job of recording the production so the parents can actually watch, and not play cinematographer.

On stage were more than 100 kids who were reciting lines, singing and dancing. Amanda moved and danced some, didn't really try to sing, and mostly just had googlie eyes for the boy next to her. It was easy to see that Amanda was different than the rest of the kids. There is nothing wrong with being different, in fact she was the cutest one on the stage. But it did leave me wondering about the parents of the other kids.

Did these parents listen to there kids singing the same songs over and over again for weeks? Did they have to work the play into the rest of the family schedule because their other kids were doing other events?

We just have Amanda, so our world is isolated by her needs, abilities, and limitations, and while I don't begrudge her or anyone else these circumstances, I do wonder what it would be like to have baseball practice or scout meetings, camp outs and ski vacations where I had to work to keep up with a child instead of providing so much of her mobility.

Again, I'm not sad, just sometimes I wonder.

The way it is

Have you ever had a moment where one word allowed you to realize something you hadn't given any thought to before? Not quite an epiphany or even an eureka moment. Just a, "Well, crap, I never realized that until now."

It was yesterday morning. My family was getting ready for the day in my bathroom. The bathroom is quite large and we fit in it without difficulty and a lot of visiting goes on in the morning. Tina had finished Amanda's hair on her side of the bathroom and I was at my sink when she asked me if I wanted a particular hair product called "manipulator." I told her no. Then Amanda tried to say the word and it came out, "Many pooooooooh later." She has more than a speech impediment, but she is still understandable in most cases.

But I looked at her and I remembered something my father's younger brother told me when Amanda wasn't even two years old. He said, "You know, she is going to have a speech impediment. Just stick with it." This from a man who had what I would consider, normal and healthy sons.

Now the second thought which was almost simultaneous was about my mother's brother. He has a daughter who is nearly 30 years and has CP and other special needs. He has never spoken about it in regards to my own situation in any form other than one time that involved an inheritance issue.

For just a brief moment I mourned the missed opportunity. Then Amanda and I loaded up in my car and she went with me to make a sales call.

One of the reason's I blog so much about Amanda is I want people to know I am approachable about the subject. I'm accumulating a lot of experiences and even gathering some knowledge on the subject. If it can benefit someone else, I'm willing to share.
The more of us like that better off we all are.

Santa, we love that guy

Ah, Christmas!!!!!!!! It was a great deal of fun this year. Amanda loves Santa Claus. In fact she proclaimed in the grocery store as she was buying cookie dough, "SANTA MY FRIEND!!!!!"

Two years ago Amanda was up at 3:30 in the morning. I managed to keep in her in bed until 5 by answering the same question every 90 seconds, "Where Santa now?"

Last year she was up at 4:30 with a loud yell of , "Hey, I'm Up!"

This year she slept in, 5 a.m. She told me, "I'm not tired anymore."

Amanda doesn't ask for a lot for Christmas. But Tina explains it better than I do as to why she likes it so much. Tina says that Amanda just likes to be included. And that is a big deal for her. Santa makes a point of seeing her and that makes her feel special. In fact, if you ask her what she got for Christmas she can only tell you about the bath sponge, because Santa left that in her stocking.

Another upside to Christmas this year, besides the extra 30 minutes sleep, was that there wasn't any assembly required. I've assembled my fair share of toys, kitchens, Barbie jeeps (Not recommended for the visually impaired) and the what not. This year was easy breezy.

I hope every one else had a joyous holiday season. Now we are onto 2010.