Sunday, May 29, 2011

A Very Special Friend.

In 1981 we were broke. I mean poor. Government subsidized housing poor. My parents had decided in 1979 that we were going to pack up and move from the north side of Chicago to my dad’s home country of Guatemala. Unfortunately, shortly after we moved to Guatemala City the country fell deep into a civil war and rebellion. Feeling it was no longer safe for his American wife and mixed child, dad sent mom and me back to the States while he stayed behind to tie up loose ends. We lived with my cousins for a while before settling in to the Timberview Apartments.

The whole experience was pretty traumatic and I found myself in Mahomet, Illinois which could not be more different than my Chicago stomping ground of Edgewater or the third world flavor of Guatemala. The air was clean and there were open fields and forests for me to play in. The only real problem was that after living at the apartment complex for a while, I was low on the friend count.

Being a new kid on the block is never fun. You worry if you will fit in and whether or not the kids are going to like you. I made a couple of friends, but was always on the lookout for more when I came across somebody playing whiffle ball and calling the game as he pitched the ball to himself, “Reggie Jackson comes up to the plate. It is a 2-2 count with bases loaded… the pitch” SMACK!!!! I had never seen a whiffle ball get crushed like that. He actually hit it OVER the roof of a two-story apartment complex. Now I grew up a baseball fan and I knew a good player when I saw one, and this guy was GOOD. As he rounded “third” and trotted to “home” he eyed me and asked, “You wanna play?”

“Sure.” I replied
“OK, you pitch.” He said as he picked up his yellow piece of plastic lumber.

After looking for a while in some trees for the ball, we finally came across it. I took my place on what I believed to be an appropriate distance for the pitching mound and got into my stretch. My opponent cocked the bat back behind his head swinging it back and forth like Gary Sheffield. I had a pretty good arm, and felt confident in my fast ball. I started my windup and threw a heater that whistled that hollow, high-pitched whir that only a properly thrown whiffle ball can make… POW.

I had never experienced a “come-backer” before. There was no time for me to react. No sooner had the ball left my hand that I was laid out on the ground. It was a Charlie Brown moment except that my shoes and socks were still on. My opponent seemed undaunted as he ran as fast as he could for what appeared to be an inside the park homerun.
“You OK?” he said after his home run celebration.
“Yeah… I guess. Man, you hit that ball harder than anybody I have ever seen hit a ball.” I replied as I brushed myself off and inspected my shoulder for welts, bruising or loss of use.
“My name’s Kevin. What’s your name?”
“I love to play baseball, how about you?”
“Yeah, I love playing baseball.”
“I like comic books too, do you like comic books? Batman and Robin are my favorite. I watch the TV show all the time.”
“Yeah, I like comics too. Spiderman is my favorite.”
“Do you wanna play superheroes after we get done playing baseball?”
“Sounds good to me! How about I bat this time?”

And so began one of the most important friendships of my life. I didn’t realize it at the time, but my friendship with Kevin would prepare me for one of the biggest challenges in my life.

My parents had taught me well. They drilled into my head that you respect EVERYBODY, and you treat them as your equal. That is what I did with Kevin. We played ball, we battled “evil-doers” as Kev was fond of saying as if he were narrating the 1960’s Batman TV show, and we explored deep dark jungles and built complex fortresses. We became good friends, close friends.

As I got to know more kids, I would always introduce them to Kevin. If we played sports, I was smart enough to know I wanted Kevin on my team. He was taller than most of us and had a great hook shot to go along with his hitting power. To the credit of the other kids, Kevin was always accepted which as I got older always impressed me. Kids can be cruel about others that are different, and Kevin (although I never thought much of it at the time) was different… he had Down Syndrome.

When you are a kid, three years seems like an eternity. But for those few years at the Timberview Apartments, Kevin and I probably played together almost every day. Unfortunately however, as I aged sadness and a reality set in for me as Kevin’s being “different” started to affect our friendship. It wasn’t that I no longer liked Kevin or enjoyed his company; it was just that I was growing up and my interests were changing but Kev was still… well… Kev. He wanted to play Batman and Robin, and do the things that were fun and adventurous for me at 11, but not so much for me at 14. Add to it the fact that I had to grow up pretty fast when my mom was diagnosed with ovarian cancer, and the rift between what Kevin and I found entertaining grew.

I often thought that life was cruel. Not because Kevin had Down Syndrome, because he was the happiest, sweetest guy I have ever known. What was cruel was that I couldn’t maintain that same level of wonder about the world, the naiveté that would allow me to still play Batman and Robin at the age of 14. Unfortunately for Kevin, there is a huge leap in development for kids between 11 and 14 years of age, and Kevin (who was in his mid-twenties) wasn’t making the leap with me.

We stayed friendly once his family moved away from the Timberview Apartments. My family moved not long after. Kevin’s saint of a mother Esther would bring Kevin over to our house to visit, and we would reminisce about the good old days. Kevin’s eyes would always sparkle when he asked me if I remembered this adventure or that game we played. I am certain that had I been up for it, Kev would have gladly gone outside and picked up right where we left off. The visits became less frequent and then I went away to college, and I believe Kevin and his mom moved out of the area.

Fast forward some 20+ years and we discover that my oldest daughter has Autism Spectrum Disorder. Although Autism is a different condition altogether from Down Syndrome, I feel like my friendship with Kevin prepared me for raising Bianca. I am not afraid of people that are different. I know that they have wonderful things to offer the world, and I am perfectly aware of many of the challenges that can arise when dealing with these beautiful people. I even feel like life is repeating itself because a couple of Bianca’s friends from dance class have Down Syndrome.

I still think of Kevin almost every day. My memories of the times that we shared are still vivid in my mind and I hope they never fade. They were good times, GREAT times. My family was as poor as we would ever be, and yet I was so happy.

Any weather was good weather for baseball with Kevin

Tough times are never so tough when you have a good friend to play ball with.

If you have not already, please take time to watch my videos, "Fixing" Autism and Autism Awareness with Nichole337 and share them with your friends.

To keep up to date with everying in Lou's Land, please subscribe to my blog. "Like" Lou's Land on Facebook and follow Lou's Land on Twitter

Saturday, May 28, 2011

Scenes from an Italian Restaurant

“Could a greater miracle take place than for us to look through each other's eyes for an instant?”
- Henry David Thoreau

An interesting thing happened to my family today. We decided to get a quick bite to eat before Sofie’s dance class so we stopped off at a pizza buffet. We sat at a high-top table near the buffet which we had never really done with the kids before. It actually worked out pretty well because Bianca didn’t have such an easy time getting up and running around. The only real loser in the deal was Luis because the baby carrier was about a foot below the table.

I went for my first pass at the buffet and to grab a slice of pepperoni for Bianca. Pepperoni is her favorite. Not the pizza… just the pepperoni. She will rip it off and eat them one by one. I have even bought her pepperoni for the house and put it in her salads. They are always the first to go.

Elsa and I got involved in a conversation as Sofie ate nothing but oyster crackers and Bianca polished off the cheese and crust of her now pepperoni-less pizza while rocking left and right in her chair. People passed by with their plates full of salad, pizza, mashed potatoes, hot wings and pierogi as we wolfed down our food trying to make certain that we made dance class in time.

Just then, out of the corner of my eye I saw Bianca reach out and grab something from a lady’s plate as she walked past us from the buffet table. Elsa and I both started to apologize profusely.

When something like this happens, it is incredibly stressful. Anybody with a child that has Autism Spectrum Disorder knows… people can be cruel and display an amazing lack of understanding. Sometimes not intentionally, but to say it happens OFTEN is putting it lightly. Many autistic children appear normal on the outside. When they act up or start to have sensory issues, it is easy for an outsider to dismiss the situation as a parent that can’t control their child or somebody that has a bratty kid.

“I am so sorry.” Elsa said, “Our daughter is Autistic.” We have learned from experience to throw this out there as soon as possible so that people understand the situation at hand.

But unlike anybody else that we have ever encountered, this lady stood there with a smile on her face. She held her plate out to Bianca and asked her what it was that she wanted. Bianca grabbed the tomato and shoved it in her mouth with a smile. Mind you, this is a complete stranger’s child pawing at her plate with their bare, grubby hands… and she smiled.

“Oh it is OK.” Said the lady softly, “My oldest has Asperger’s. He is very high functioning, but has a tendency to say not very nice things at inappropriate times. He is 21 years old now.”

The lady gave Bianca a loving pat on the head and said goodbye.

My heart melted. Elsa was moved to tears. The woman never even threw the plate out, or went back and got another salad. She shared, and she did so willingly and happily. This woman displayed kindness and understanding on a level that is beyond comprehension for most… unless you have been there.

The experience has stuck with me all day. I can’t stop thinking about it. Why did the kind blonde lady with her starter salad react the way she did? It is understandable if she was nice and kind AFTER we told her about our daughter’s condition. But she was warm and loving from the start.

Empathy. It was pure, genuine, real… empathy. It was the ultimate example of having walked a mile in our shoes.

The world needs to discover a whole lot more empathy. It appears to be in short supply. Take a moment today to try to see something from another’s point of view. It can only make you wiser and more understanding. Then maybe someday you will find yourself in a position to shock a stranger with kindness and understanding too.

If you have not already, please take time to watch my videos, "Fixing" Autism and Autism Awareness with Nichole337 and share them with your friends.

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What Can’t Can Your Child Do?

(Note from Lou: Before there was a "Lou's Land", I used to write in Facebook Notes for my family and friends. It was with their encouragement that I decided to make my thoughts, feelings and observations public. This note was originally written on 04/11/11 and published here when I started my blog on 05/28/11.)

I thought I would write a quick note since it is Autism Awareness Month.

The most draining situation a parent of a child with Autism faces is not the day to day interactions with the child, but rather the re-living and re-telling of your child’s condition when you apply for new services or get a new specialist. You get bombarded with the same questions over and over… Does your child talk? Does your child play with other kids? Can your child do this, that, the other thing? Can your child perform any miracles?

You get the point. It is annoying. I understand the reasoning behind it. You can’t take your child to a new doctor or therapist and expect them to know all about your kid and his/her personal quirks. I often say that the reason it is called the Autism Spectrum is because the symptoms vary so greatly, that not one Autistic person has the exact same type of Autism as another. Autistic children are like snowflakes, each one is unique and carries with it unique beauty, characteristics, and complexities.

My daughter Bianca is going to be entering kindergarten next year and the time has come for yet another evaluation. This time her evaluation will result in how she is placed within the school system. Will she be able to go to a regular kindergarten class? Will she be able to go to a special needs kindergarten? Will she have to go to a school with only kids with special needs? I don’t know. What I do know is that the portion of the evaluation I had to fill out was tedious, depressing, confusing, and irritating.

One form contained 124 questions and asked me to rate each question on a scale of 1-7, a “1” meant you never witnessed this particular behavior, and a “7” meant that you witnessed the behavior more times in a day than you could count. The parent was then supposed to add up the numbers and cross-reference some stupid chart. Another BOOKLET had 11 PAGES of yes and no questions. By the time I finished answering all of these questions and filling out all the paperwork, I felt woozy. I could have sworn I just battled Apollo Creed. I was a beaten man. All I saw were pages of negativity all in preparation for an impending judgment by some group of people that don’t know my daughter.

Does your child play with other children? No
Can your child point to three body parts when asked? No
Can your child eat using utensils? No
Is your child potty trained? No
Does your child talk? No
Can your child draw an “X”? No

How about instead of asking me what my kid can’t do, you ask me about what my child can do? Herein lays one of the many challenges facing a parent of an Autistic child. It is rare for somebody to ask what your child CAN do. Above all things, parents like to boast about their child’s accomplishments. When my daughter that is not Autistic sings a song, or learns a dance, or builds something I tell my parents, or post it on Facebook proudly sharing the GENIUS that is singing a crappy Justin Bieber song at age 4. To a certain degree I am able to do that with Bianca as well, but not in the education system. Not in anything institutionalized. All they seem to want to know about are limitations.

Do you want to know what Bianca is capable of? She can make the darkest days seem bright with a mere hug. She can make you double over laughing with her contagious laugh. She can make you feel like you are the most loved human being on the planet and can melt you with her smile. Bianca can amaze you with her memory, her problem solving, her ability to speak in two languages and her fearless conquering of a playground. My daughter has the amazing ability to give life meaning and make you appreciate all you have.

My daughter can do many things, just not anything I am asked about on these stupid forms.

If you have not already, please take time to watch my videos, "Fixing" Autism and Autism Awareness with Nichole337 and share them with your friends.

To keep up to date with everying in Lou's Land, please subscribe to my blog. "Like" Lou's Land on Facebook and follow Lou's Land on Twitter

Reflections on a Sad Day

(04/06/10) Eight years ago today was the worst day of my life. A lot of people say that this day or that day is the worst day of their life... but I actually know. April 6th, 2002 was absolutely miserable.

Elsa and I hadn't been married a year, and I had just gotten laid off. We were trying to figure out how to pay for the new home and car. On top of that Elsa was 21 weeks pregnant, so we had a massive COBRA payment to come up with every month. We were working in the red, but could at least look at the silver lining... we were going to have a family and that has something I had wanted since I could remember.

I always knew I wanted to be a dad. The idea that you get to mold a person, teach them right from wrong, tell them your philosophy of life, brainwash them to root for your crappy sports team, all of it appealed to me. The roughest part of the failure of my first marriage wasn't the collapse of my relationship (that was actually best for both of us) but rather that I was now not going to be able to achieve my goal of having my family complete before the age of 30. So fatherhood was something I wanted, and wanted badly. My wife was out of the first trimester, so according to all the professionals we were pretty much in the clear. Being a dad was a mere 19 weeks away!

On April 5th, 2002, Elsa had not been feeling so good. She was having a little cramping and some minor discomfort. We took our niece to the mall, and Elsa decided to sit on a bench and rest instead of excerpting herself. After we were done shopping, she still wasn't feeling well so we decided to go to the ER and have her checked out.

All seemed fine. They monitored Elsa for contractions, but found none. The baby's heartbeat was strong, and the baby was kicking and moving quite a bit. They ran a series of other tests and everything checked out. So they told Elsa to make sure she was drinking water and resting, and to follow up with her doctor.

That night, Elsa went to bed early as I painted our basement. It was the middle of the night when I took a break from painting and went into our home office to surf the web. I heard Elsa shuffle to the bathroom, and I asked if she was OK. She said she was fine... a few seconds later the shriek made me painfully aware that nothing was fine.

So began the nightmare. Every expecting parents worst nightmare coming true right before my very eyes. We rushed to the hospital as fast as we could. I don't know that I have ever driven so fast in my life. The whole time my wife is in hysterics. We both knew what was about to happen, yet I kept telling her that everything was going to be alright. It wasn't.

We lost Angel on April 6th. Unfortunately for her, she looked just like me. She had my nose and face, but was incredibly tiny. I loved her so much it hurt. I hurt for my loss, I agonized over the fact that this was one situation that I could not fix. I could do nothing to lessen the pain for my wife, all I could do was re-assure her that the loss was not her fault and that I did not blame her. I just kept telling her that I loved her, because to be honest at that moment there is nothing else one can say.

Due to state laws, after 20 weeks of gestation, the baby actually needs proper burial arrangements and to be named. I am sure we would have done those things anyway, but the process prolonged the pain and agony.

There is not a day that goes by that I don't think about Angel. The greatest moment for me was when Bianca was born. She had my nose and face and right away the nurses commented how there was no paternity test needed. All I could think was that she didn't look like me, she looked just like her older sister.

I would be lying if I didn't say that every day since the loss of Angel has seen a little less bright and cheery. An incredible strain was put on my marriage from some of the events that happened. I shut down, became distant and didn't want to deal with anything. Depression is a common term, I like to think of it as utter misery and self pity.

I hope nobody ever has to go through what we went through. If you do, please know that you are not alone. There are many people out there that have gone through the same ordeal. That isn't to take away from your anguish, or lessen the degree of personal hardship, but rather to let you know that there are many shoulders out there upon which you may cry on.

Fast forward to eight years later, and we have our family. We have two beautiful girls, a son on the way, and I wouldn't trade them for anything.

"Challenges make life interesting, however, overcoming them is what makes life meaningful." - Mark Twain

We love you Angel.

If you have not already, please take time to watch my videos, "Fixing" Autism and Autism Awareness with Nichole337 and share them with your friends.

To keep up to date with everying in Lou's Land, please subscribe to my blog. "Like" Lou's Land on Facebook and follow Lou's Land on Twitter

Happy Holidays?

"Life is what happens to you while you're busy making other plans." - John Lennon


Elsa and I had the groundwork all laid out.

We would take separate cars to the mall. Elsa would drive with the girls and our neighbor's daughter Selena (who is the only one who can do our girl's hair). I would drive by myself and get to the mall slightly before Elsa. After parking, I was to take out the stroller and then wait for the handoff.

Selena and I would then take the girls to the family restroom and change them into their pretty Christmas dresses. This would ensure the lowest risk for leakage, spillage, etc. on the pretty outfits.

While changing the girls, Elsa would find parking and then we would rendezvous at the Santa picture line.

This all went pretty well. Elsa had a little difficulty finding parking and as we got closer and closer to the front of the line, Elsa decided it was best to create a parking spot and run in to join us.

While waiting in line, I couldn't help but picture in my mind our two little angels delicately balanced on Santa's lap. I knew getting them to look at the camera might be a little hard, especially for Bianca, but this was the third year of Santa pictures, and the previous years went VERY well.

Sofia and I spent extra time during the week talking about Santa and the sound that Santa makes when he laughs. Sofie does a good "Ho Ho Ho" but is lacking the lower register required to sell it. I pointed out every time Santa appeared on TV and reminded the girls that Christmas time was here, and that Santa was going to bring them presents AND we were actually going to see him in person!!

Santa's helper broke me out of my daze and asked me what picture package I wanted. Not to be outdone, I proudly informed her that we were going to get the works... an 8X10, 2 5x7's, 4 4x6's, 16 wallets, and because it is the digital age... a picture CD!!

Elsa and I then carefully walked these two precious ladies up to the very realistic looking Santa, spun them around, sat them on his lap... and then magic happened....

Matching dresses: $40
Mental Health Co-Pay for two: $100
Christmas memories....

Have a great holiday season, and when you are feeling stressed or about to explode because things aren't going exactly as you planned them... smile... and let it go.

If you have not already, please take time to watch my videos, "Fixing" Autism and Autism Awareness with Nichole337 and share them with your friends.

To keep up to date with everying in Lou's Land, please subscribe to my blog. "Like" Lou's Land on Facebook and follow Lou's Land on Twitter

"F" stands for Fool

** A note from Lou: Before Lou's Land, I used to just write Facebook notes for my friends and family to read. After establishing a collection of writings, friends kept suggesting that I start a blog and share my stories. This was one of the first notes I wrote. It took place on Bianca's first day of Pre-K. We still had yet to receive a diagnosis, but we were pretty certain what the situation was. I thought it would be appropriate to share this since school is starting back up. Hope you enjoy.

(11/05/08) - Many of you may not know, but Elsa and I believe that our oldest daughter Bianca is struggling with some developmental delays, and may very well be autistic or on the autism spectrum.

Bianca has been getting Occupational, Developmental, and Speech Therapy for the last year and a half. When she turned three this last Monday, she aged out of her early intervention at home therapy and has now started going to an early intervention pre-school four days a week. She really needs help with her socialization skills and speech. She talks all day, but she doesn't converse with people.

It has been stressful on both Elsa and I as we struggle with the emotions of sending a child that is so young away to a school. Bianca on the other hand... no problems. She cried the first day, but I think that was because she saw the playground and wanted to hit the slide and swings. She rides the bus (full sized... thank goodness) and really enjoys it. I understand from a fellow parent who watched her get off the bus on her first day riding it, that she even got in line with the other kids, held hands and walked into the school together.

Bianca waiting for the bus.

Yesterday, I unpacked her book bag and looked through her folder. As soon as I opened the folder... my heart sank. Emblazoned on the first sheet of paper in the folder was a giant letter "F".

I couldn't believe it! The new therapist failed Bianca on her first session. My blood boiled as I tried to comprehend why in the world they would grade a three year old in the first place. What even quantifies getting an "F" at that age? I actually had to fight the growing lump in my throat and watering of my eyes.

I studied the paper carefully. The instructions were clear, "Point to the object when named."

I looked at the pictures on the paper. There were fingers, the number four, a family, the number five, fruit, a face... none of these items were things too complicated for Bianca to figure out. She loves to label things, and does so all day. HOW COULD SHE FAIL?!?

Then I started thinking... she knows fingers... four.... family... five... fruit... face.

Wait a minute.

Fingers... four... family... five... fruit... face.

How strange that all of these words begin with the same letter.... the letter "F".

She was learning words that began with "F". There was no grade given.

"F" stands for Fool... and I am one of the biggest around.

If you have not already, please take time to watch my videos, "Fixing" Autism and Autism Awareness with Nichole337 and share them with your friends.

To keep up to date with everying in Lou's Land, please subscribe to my blog. "Like" Lou's Land on Facebook and follow Lou's Land on Twitter