Tuesday, April 28, 2009

Occasionally my child will sneeze and the results looks like she is being attacked by a jellyfish.

Tuesday, April 21, 2009

Better than golf

Last night was opening ceremonies for our softball league. Our Challenger League is made up of four teams, The Alley Cats, Superstars, Angels, and New Horizon. We gathered at the field along with all the other tee ball teams and softball teams for girls 14 and under. We Alley Cats wear a bright yellow t-shirt jersey with a kitten on the front that says, "Around Here The Cats Are In Charge." Amanda jumped into the middle of the team and hooked up with her best friend, M. From that point on she had nothing to do with me.

The team went out onto a field and from the air must have looked like 200 spilled Skittles. Amanda was in the front of our group and I just hung out in the back with the coach. I looked down and there was our newest player. Her name starts with a J. She is 16 years old, stands 4 ft 6 inches and and has Downs Syndrome. She is a living cherub. I squatted down and said hi and she waved back at me. Then she pushed her older sister away who had brought her on the field and and grunted a "GO" to her. She decided I was her friend. Before I knew it she was holding my hand and smiling at me. She doesn't speak much, which is something I'm very familiar with, she just kept waving to her parents who couldn't see her in the crush of people on the field.

While the commissioner was explaining the need to have all the paperwork turned in on time I felt a slap on my backside. I turned around and there was J. hopping up and down with a distressed look. I knew all about this, "You need to go potty?"

"YESSSSSSSSSS!" So she took my hand and we toddled off the field. Tina helped her sister get her to the bathroom and I went back to the field. About five minutes later there was another swat on my butt, I turn around and J. is back and smiling.

A few minutes later we did the balloon release. I gave her a couple of balloons and she smiled hard enough that my face hurt. Then we left the field. I delivered her back to her family and Amanda and M. were ready to play ball. It was tough to tell them we had another week before our first game because they are more than ready.

The whole hour was just a blast. We'll have six games and I will pitch to our players who don't need a tee. Amanda is deterimed to run to first base by herself this year. After that she said she wants me with her, so we'll have to set the batting order up accordingly. It should be a fun little season.

Monday, April 20, 2009

My day

Last Wednesday I took an afternoon for just myself; no work, no husbandly or fatherly responsibilities. Just John.

I went and played golf with the Wednesday group at my club. I call it group therapy because it is my time to destress. I played in this group a lot last year and it truly helped me improve my game. On a modified point system I ended the year needing 24 points a round. As I posted the other day, I haven't really played this year and my game has a lot of rust on it, about equal to the amount of dust on my clubs to be honest.

The front side started out OK, with three boogies for three points and then the wheels fell off. I was swinging much too hard and simply slapping the ball around like a hockey player. But something very unique happened on the 6th hole. Ten days before I had lost a ball approaching the green, when I found my ball this time, missing in the exact same spot, I found both my shot from this round and the one from ten days before. I know for 100% fact that this was my ball, a Titleist NXT Tour 4 with a blue JC written in marker. I thought that was pretty cool. I still doubled the hole for no points.

I finally boogied 9 for a point and then doubled 10. My two playing partners were pretty disappointed in me since both have played with me many times and know me to be a solid player. Then on 11 I rebooted my brain. I thought not about what I was doing but what I used to do and then I went par, par, par, boogie, par, boogie, double (water), and par making my points at least for the back.

The day cost me an extra $5 for being the lowest below my points but then I hooked up with two guys to play the back 9 again. I doubled the first hole again and then went, par, boogie, par, par, birdie, boogie, par, birdie and won 4 drinks for the effort. More importantly I was hitting fairways and greens like I am suppose to, there wasn't any scrambling on the back, just kind of text book golf.

Now all of this is important to me because it was my day, the day I wanted and needed. It has fixed more than my golf swing, it has me in the mood for Spring and Summer.

Tuesday, April 14, 2009

This was new

Yesterday she did something that caught me off guard even though it is a normal everyday occurrence for most parents. We were leaving a small restaurant and she bolted out the door and was headed across the parking lot by herself. I caught her in three steps and grabbed her hand and told her to not do that again. Of course she asked, "why?" I gave the simple and direct answer, "So you you don't get smashed by a car." She squeezed my hand pretty tight when I said that.

In college I once pulled Tina out from in front of a moving car when she wasn't paying attention. Anyone can do it. I just didn't think Amanda would bolt like that.

You see, her mobility has always been less than average. She didn't crawl until she was 11 months old. She started cruising at about a year and a half at which point therapists and doctors said she would walk "any day now." More than a year later an orthopedist finally prescribed orthopedics and a reverse walker. She used the walker for more than six months before she walked independently. But even then she was very unsure of her footing. So for the most part when were out of the house I simply carried her.

I would scoop her in my left arm and just take her anywhere she needed to go. I'm a stout 210 pounds and it really wasn't much effort until she cracked 60 pounds. After that I would carry her only for stairs in public like at football games and such.

Her condition allows us to have handicap parking permits. Parking lots were a real challenge until then because of her lack of depth perception. She thinks every stripe is a tripping hazard so she tries to step over them. The closer we park the better, otherwise we will never make it across the parking lot. This is why you will often see her with me at Home Depot. I tell her she needs to come with me so I can park close, she laughs and yells, "SIGN!" I won't use the sign without her of course. Too many people need the spots. Although, one of the funniest quick scenes from the Simpsons is when Homer parks across four handicap spots and walks into a store dragging his leg.

As Amanda continues to progress I'm just going to have to be prepared for "normal" behavior. I'm just not trained for that.

Monday, April 13, 2009

20 Frames to go

It is the last bowling night in the Challenger League until the fall. Next week we have the opening ceremony for softball.

What does the end of bowling mean to the world. Well, for one thing my Bacardi consumption may drop a bit. It takes an extra couple of double rum old fashions to knock the edge off a bowling night. It also means I'll have an extra $6 in my pocket Tuesday morning. The $6 is the price of two bowling games in the league and it always comes out of my pocket and not Tina's purse, which I find odd because she almost always pays for everything when we are out as a family. That way she doesn't have to ask me for a receipt that I may or may not have. I don't know what happens to those things.

But most importantly, the end of Monday night bowling nights means I stop having dreams of thundering cannons. There really is nothing like the sound of 40 people bowling at the same time and being trapped in the middle of it like a traffic cop directing new drivers. While our bowlers are actually pretty good, they just don't seem to grasp the concepts of personal space or the etiquette of allowing the bowler on either side to bowl first. At times it is like a mob armed with bowling balls and the rum doesn't even help. Softball is much more controlled and civilized, at least until a ball is hit into play. Then more often than not all hell breaks loose. But that is my game and I'm OK with it.

Friday, April 10, 2009

A goof friday

I wouldn't have bothered with work for the half day it if it weren't for Amanda.  She loves my office and goes in every Friday.  Many of the people who work there are her best friends and have watched her grow up since the time she was born.  Today she brought in her Special Olympics medals and pictures.  She showed them to sales and accounting as well as the Fed-Ex guy who got to know her last summer when she came in almost every day.  

She is a darling child who once again impressed me.  She told me my neighbor didn't have to work today because he worked at the same place as my wife's friend's husband.  She had the whole thing figured out and told me in a complete sentence.

She has been tired all day and feel asleep at eight.  Daddy loves a tired kid.  I'm calling it a night too.

Thursday, April 9, 2009

More than a special day

Yesterday was the Special Olympics in Bowie County.  This has become my favorite day of the year, surpassing Christmas, Thanksgiving, Superbowl Sunday, and my birthday.

The Special Olympics was founded to allow the physically and mentally challenged an opportunity to participate and compete in athletic events.  It gives these athletes an opportunity to shine.

What I love about it is that while these special people are having their day and loving it, it is made possible by a host of "normal" people who for one day put the complications, drama, and complexities of their own lives on hold to make sure this day happens.  All over the track and field I saw hugs, laughter, handholding, cheering, friendship and true joy by all those participating.

Amanda, like all atheletes at the event, was assigned a helper from a school.  Hers was a senior from Texas Senior High School by the name of Faith.  She is a lovely young lady who has  a warm smile and is training for a half marathon.  But when she helped Amanda run the 25 meter assisted race she was almost breathless as Amanda came in third out of five.  Amanda does not have depth perception and had no idea how the finish line was, so she just pumps her legs and one free arm and goes as fast as her little body will let her.  Both were equally excited.

Yesterday will stay with me for a long time, because not only did I see my child do well in her events but I heard her speak more than ever before.  She said things such as:
  • Best year ever
  •  I want my yogurt
  • Thank you no work, Special Olympics
  • When do it again?
After so many years of only yes and no answers and the single question of, "why?' I just eat up every word she has to say.

Now today it is back to the normal routine of our lives, but the glow on my face is not just because I forgot to put sunscreen on myself after I watched Tina lather up Amanda, it's because yesterday I got the best present, biggest meal, my team won, and I turned 39 again all rolled into one.

Monday, April 6, 2009

On the links

I haven't played golf this year and I find that to be just tragic. So Saturday morning Amanda and I were up and ready to go. We cooked pancakes and got dressed in proper golf attire. Amanda in green Capri shorts and green striped shirt. I went for that dapper black slacks and light blue shirt with black piping and matching black hat. We looked the part. Then we warmed up on the Wii with Tiger Woods before heading out. I set Amanda's player on easy and as usual she cleaned my clock because I give her mulligans and putt for her. Straight up I think I can take her.

We drove out to the club and unloaded Amanda's small bag with a wood, a 6 iron and a putter. I gave her a sleeve of balls and she was ready. I had my clubs brought out of storage and put on a cart along side Amanda's. We then went to the clubhouse for lunch. Her order was grilled cheese and since it was Saturday I treated myself to some cheeseburger sliders. We ate our meal and visited about her up and coming softball season. Which mostly was her saying the name, "Dalton" over and over again.

Dalton is the teenage son of a coworker who Amanda always wishes good luck to before he plays baseball. According to his mother this last time Amanda did that he hit three homeruns in two games. He asked if he could help Amanda play on her softball team this year and now she is in love with with him. She tends to focus on individuals rather intensely and that is actually OK with Tina and I. It gives us a little control, not much, but at least a little.

It warmed up while we were having lunch and we headed to the driving range. Amanda took her jacket off and said, "Pretty day, don't need jacket." Her sentences are getting longer and I'm remembering every one. The range was empty as most of the players were on the course with the large Saturday group. I gave Amanda about 20 balls and she started shoving them forward. Occasionally she would hit one a little more pure and scream with delight.

Like I said, I hadn't played in four months. The first thing I had to do was wipe all the dust from my clubs. The skills came back rather quickly, but not the touch.

When Amanda plays golf with me she doesn't tee off. She hits from the area of my tee shot and on the first hole she advanced her ball almost 30 yards. I gave her a "Yeah Amanda." When we get to the green she places her ball a couple of inches in front of the hole and taps it in and yells, "BAWDIE!" She is very enthusiastic which is part of her charm. She has picked up a new trash talk too, "Not on your best day." I taught her that one.

We played nine holes. She got a little tired and stayed in the cart for about 3 of the holes. Afterward we went to the clubhouse and split a piece of chocolate cake. We both love chocolate cake. We agree that white cake might as well be broccoli. In hindsight we should have held off on the cake. On the drive home she had an accident that involved me dawning latex gloves. But, compared to what happened at Chick-Fillet three years ago, this was nothing. It was less than ten minutes to clean her up and we were back in business for the rest of the day.

As for the Chick-Fillet incident: NEVER sit at the first both next to the side entrance. I can't believe the building wasn't razed after watch happened there. It was the first time I ever left my body and went to my happy place to get through an event.

She slept hard Saturday night and a little later than usual on Sunday morning. It was a nice 24 hours. And really that is what a person wants when they are taking it one day at a time.

Friday, April 3, 2009

An ARD to remember

As I have previously posted, ARD meetings are not something Tina and I enjoy. However, the one we participated in Wednesday may change our mind on the subject.

We met with most of Amanda's education team. Some of the these therapists have been working with her for more than five years. Now while we have had road blocks in the past from the diagnostician, this time there was overwhelming support for Amanda on all fronts. More importantly, everyone was saying the same thing and reinforcing the consensus of Amanda's needs as well as achievements.

But the highlight of the ARD was when the dance instructor, who has never participated in our ARD before, told us the following. "I know you have heard this before but you have never heard it from me, I love Amanda. The kids in my class love Amanda. She tries very hard and all the students look out for her." My heart went to about 200 beats a minute and I came as close to crying in a room full of women as I ever have before. It just made me feel so warm inside.

Amanda will be moved to a less academically challenging class in the fall. It will have more of an emphasis on life skills, which is an area she can actually improve in and contribute to society as a whole. Not every child is destined for greatness, but that doesn't mean they can't be amazing in their own right. I'm proud of my girl.