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.

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.

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.

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.

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.

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.

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.

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.

She does have her opinions

These exchanges between Tina and Amanda took place last week:

Tina: I don't want to talk on your phone anymore.

Amanda: I won't have it!

Tina: but,

Amanda: But Nothing! Talk on the phone.

Sometimes you have to be careful what you wish for, you just might get it. Amanda is talking about a whole lot of things, but the flip side is, she is very demanding and critical.

Tina bought some presents for the teachers at school.

Tina: What do you think Amanda?

Amanda: Oh Mama, soooooooooooooo tacky.

Tina: They have chocolate in them.

Amanda: Mama, I want one.