Thursday, December 29, 2011

Dad vs. Man

"Sometimes the poorest man leaves his children the richest inheritance." - Ruth E. Renkel

Being a dad doesn't mean you can’t be a man. When you have a child with special needs, they need their dads to be as involved as possible. Being a dad makes you a BETTER man.

Some men feel that the two are mutually exclusive. Scratch that. Some women feel that way too, so I guess it is some PEOPLE feel that being a dad means you can’t be a man.

Why do I say this? I say this because to me it is almost like there is an opinion out there that a guy has to turn in his “Man Card” in order to be fully vested in their kids. By that I mean that they take part in and are an active participant in ALL of the day to day routines of their kid’s lives that their schedule allows.

It is a disturbing phenomenon that I see firsthand almost every day. In the vast majority of events, therapies and functions that I attend, I am one of the only guys if not the only man in the room. At first I chalked it up to my unusual work schedule; my days off are in the middle of the week which allow me to be really active in Bianca’s week. But I work nights when I do work, so I am able to participate in weekend activities as well… and again, I am in the minority by a LONG shot.

Sunday, December 25, 2011

The Holiday Spectrum

“Traditionalists are pessimists about the future and optimists about the past”
-          Lewis Mumford

Christmas. It conjures up different meanings for different people; some religious, others more secular. Anymore, I just think of crazy people killing each other in stores over really inconsequential material items.

What Christmas almost always means for everybody is tradition. Each year people make a habit of decorating their house the day after Thanksgiving, some families trek to a certain relative’s house that always seems to hold court on Christmas, some families have gift giving traditions. The process of decorating the home is a tradition for most. They break out all the Christmas related trinkets that they have collected throughout the years, most with sentimental value. Ornaments on the tree are usually special for people as well. They were either given by a family member, or maybe they denote a special event in the life of your family… like a birth… or in our case three births. There are midnight church services that families go to in a celebration of their faith. Maybe you are one of the people that have developed a new tradition and pitch a tent for Black Friday specials outside of a store? If so, take some milk with you to pour into your eyes if you go to Wal-Mart,

We take these rituals for granted. When Christmas comes, we execute these traditions as if we are on auto-pilot. We do them, because that is what we have ALWAYS done. To do anything different would seem foreign. They are almost like a reassurance for us that we have survived another year.

Wednesday, December 21, 2011

A Little Perspective Folks

Being happy doesn't mean that everything is perfect. It means that you've decided to look beyond the imperfections.” - Unknown

Somehow I volunteered to be a Room Parent for Bianca’s school. I am not sure how I ended up volunteering. I got a call out of the blue saying that I had signed a form indicating thatI was interested. I have no recollection of signing the form at all. The only thing I can figure is that after another sleepless night, I blindly signed the form while in a walking coma.

 It isn’t a huge responsibility, and I was glad to be able to help. I volunteer to help in recess once a week and I love all the kids in the class and would do anything for them. Being a Room Parent basically requires that you plan a couple of parties: Halloween and Christmas. Pretty easy stuff, but when you have three kids (one with special needs) and work full-time, and work an opposite schedule of your spouse… time can be hard to come by. I missed planning the Halloween party because my dad broke his hip during the planning week and I went to be with him and support my mom. So I am trying to do a lot more for Christmas to make up for not being so involved last time around.

Saturday, December 17, 2011

Starabella Shines Bright!

Not long after I put out “Fixing” Autism I read a comment from a woman by the name of Sharon Fialco saying that they too had a child on the spectrum and that her daughter was very musical. In fact her daughter was a pianist and composer. Together with her family they put together a trilogy of books complete with musical accompaniment. The comment was very warm and touching. Sharon went on to say that she was so moved by my video that she wanted to send me a copy of the books as a sign of appreciation for my video.

I was taken back and a little leery of just giving out my home address, but the gesture seemed genuine and a quick Google search made me rest a little easier as I looked over their website and read some more on the Fialco family.

Thursday, December 15, 2011

Fixing the Misconception

It is time to answer another question from the old mailbag. This one is BY FAR the most often asked question. I have answered this in various posts and responses, but perhaps it is time I put the answers all in one spot so that I can just reference something for people that are having a hard time connecting the dots or are quick to assume that I am suggesting something that I feel I clearly am not.

Suzi N. asks on my Facebook page:

When you used quotation marks for the word "fix" in your video, what did you mean? I am part of a group - and right now that is the main discussion. To me, and please correct me if I am wrong, it is about making Bianca the best she can be by fixing the system.”

Thanks for asking Suzi! It means a lot of things. Perhaps I can best answer you by saying what it does not mean. It does not mean that I view people with autism (or any disability or disorder) as being broken people in need of fixing.

Sunday, December 11, 2011

Family Matters

"Stay committed to your decisions, but stay flexible in your approach."
- Tony Robbins      

One of the most common questions I get asked by other parents that have a child on the spectrum is about having more kids after an autism diagnosis has been introduced into the family unit.

I was recently asked this on my Facebook page and I wanted to give the response the weight it was due, so I decided to answer the question via my blog:

So I'm trying to decide, when is the best time to have another child. My son is 2 and has ASD, and is our first. I think it'd be good to have another child for him, and I want them to feel close, but at the same time I don't want to take any of the attention he needs away from him. So I'm wondering if you might be willing to let me know what your opinion is on this subject?“ 
- Leslie D.

I don't know that there is a right answer to this question Leslie. It is something that as to be talked about between you and your husband at great length though. I can share with you my experience, and provide the disclaimer that I am not sure that what we did, nor how we did it was ideal. I am certainly not suggesting that our story be used as a blueprint, so please take what I am about to write for what it is worth... my flawed experience.

Tuesday, December 6, 2011

Caring for Military Kids with Autism Act

Please watch the following brief video:

Lets lessen the burden on military men and women by treating their families with the respect they deserve.

Please write your representative by showing your support in the passing of Caring for Military Kids with Autism Act H.R. 2288.

Also, please check out Rachel's blog Stimcity for blog posts written from the heart.

Thanks for everything you are doing Rachel and for your support of me. If there is one thing I have learned, from my advocacy it is that we are all in this together and the support from others who are dealing with ASD is amazing. We are family.

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

Wednesday, November 23, 2011

Giving Thanks

Ah… Thanksgiving; the day where most Americans will begrudgingly trek to some relative’s house that they really don’t want to be at, stuff themselves just short of exploding, watch football and if we are lucky… take one second out of their jam-packed day of gluttony and selfishness to be thankful for something… anything.

Most Turkey Days, I am ashamed to admit, I could qualify for all of the above. This year though… life is different. The veil of self-pity, selfishness, depression has been lifted… and boy am I THANKFUL!

I am thankful for my family. My folks are still around and my dad seems to be recovering nicely from his broken hip. My marriage has managed to survive another stress-filled year. My kids are happy and healthy. My father-in-law is still raising havoc at the age of 90! Things at work are going well too, I have a career doing something that I LOVE doing and have not felt like I have ever had to go to a “job”.

Usually that would round out the list. But 2011 has been different. The list is a lot longer, and it is time that some people got some praise and thanks.

Sunday, November 13, 2011

Greatest Birthday Gift... EVER.

Since I can remember, I wanted to be a dad.

Most kids could tell you they wanted to be a baseball player, a veterinarian, a ballerina, a fire fighter or some other career goal. I had those too. Mainly stand-up comedian, SNL actor or radio personality were the things I wanted to do more than anything. Somehow I landed in TV, and I feel fortunate enough to never feel like I go to a “JOB”. However, professional aspirations aside, more than anything in life… I wanted to be a dad.

That opportunity finally happened on November 3rd, 2005. Born exactly on her due date, my beautiful Bianca came into the world… on my 34th birthday. When asked, “What was the greatest birthday present you have ever received?” most people have to think about it a little. Not me. Not only was Bianca the greatest gift I have ever received in my life, she continues to give and enrich it by teaching me to be a better man, husband and father every day we spend together.

Tuesday, November 1, 2011

Trick AND Treat

Yet another year of little ones dressed like everything from scary to funny, superhero to anti-hero, dead to undead and then the ones that you don’t know how to classify.

Bianca had a class Halloween Party, so my wife and I went to take pictures, help out and meet other parents of the kids in the room. I have gotten to know the kids pretty well since I volunteer to help with recess once a week, but I am not that familiar with the other moms and dads. The kids seemed to enjoy their pumpkin decorating and nachos. The cookie decorating was a particular favorite of Bianca because she got to eat a cookie, and because she inhaled every possible candy sprinkle she could find.

Tuesday, October 25, 2011

"Fixing" Me

When I made the “Fixing” Autism video, I knew it rang true for me. I wasn’t sure how others would perceive it, but I thought it might help other families affected by ASD know that they are not alone. Even more importantly, I hoped that people outside the autism community would see it and perhaps understand what it meant to be touched by the disorder.

The feedback to my “Fixing” Autism video has been astounding. When I made the video I thought that I had something special, but I thought it was special for ME. I put the video on YouTube because I wanted others to see it, but I figured viewership would be limited to my Facebook friends and some people who might stumble upon it if they did a YouTube search for “autism”. I shared it a couple of times on the Autism Speaks Facebook page thinking that people visiting that page would understand the frustration and anger that inspired me at 4:00 AM to silently scream at the establishment.

Thursday, October 13, 2011

So funny I forgot to laugh.

One of the goals of my advocacy is to create an open dialogue. This is the first post in which I am asking the reader to contribute and share ideas. Please participate. The more the merrier. This could be a complete disaster, or very interesting. Please keep it respectful and civil.

Since my decision to dive into advocacy, I have learned a great deal about social media; How to target interests, how to promote, how to have fun with, how to do research and gauge people’s reaction.

One of the tools that I use is TweetDeck. It is a great program that allows me to monitor several different interests. I have a sports stream for work and for my own personal enjoyment, and I also have an autism stream that I watch very closely. Through that stream I have met a lot of great, involved parents that are fighting like hell for their kids. It lifts me up every time I fire up TweetDeck because it is a constant reminder that my family is not in this battle alone.

Sunday, October 9, 2011

Oh Poop!

My autistic daughter who is almost 6 and not fully potty trained will at times play with, paint with, and/or eat her own feces.

There. I said it.
Is it embarrassing? Sure.
Is it sad? Extremely.
Why bring it up then? So that I can let it go.

Wednesday, October 5, 2011

Flying High

When I think back to when I was a kid, there are moments that I can recall that take me right back to that time and place in which I was truly free. Free of responsibility, free of stress, free of worry… I suppose it is called innocence. One of those moments is riding on the back of my mom’s bike along the Chicago lakefront. We moved from Chicago when I was 8 but when I returned as a young man and would ride my bike or rollerblade along the lake it would take me back… every time.

Have you hopped on a swing lately? Try it. Don’t be afraid of what others are thinking or saying. Just go to a park one day, hop on a swing and fly. I guarantee your senses will take over. It is truly remarkable. I believe that it is the closest to a time machine man will ever get. The breeze in your face, the squeak of the chain, that little jolt that happens when you test the boundaries and soar too high… all of these things can’t help but take you back. You had the phase on the swing where you always wanted your parents to push you because it made you feel safe and secure. You knew they would be right there to catch you if you ever fell. You didn’t even have to kick to keep your momentum going. Your parents did it all for you.

Eventually however, you reached a point in which you didn’t want your parent’s assistance. You wanted to be independent. You hopped on all by yourself; you pushed yourself back and then threw your legs forward. You learned how to maintain control and what your limits were. Your parents, though willing to give you that push, were now no longer a necessity. It was still nice to know that they were there for you, but their mingling in your affairs was no longer vital to the cause.

Thursday, September 22, 2011

The Girl of a Million Words

We talk to each other all the time. We didn't use to. Things were not always so easy between us. I suppose that is usually the case in any typical father/daughter relationship. She feels like nobody gets her, and he feels like he is not an important enough figure in her life whose words get ignored. It just took a little while for me to understand her language and speak to her at a level in which she could comprehend what I was asking of her.

Friday, August 19, 2011

A Special Thank You!

I just wanted to take some time to thank everybody that has taken the time to watch and comment on my "Fixing" Autism video. I think I have shed as many tears reading the stories that are being shared as it sounds like viewers have shed while watching the video.

Even greater thanks to my Facebook and Twitter friends, subscribers to Lou's Land, and Marc Sirkin at Autism Speaks. I could not have gotten this message out without you.

Lou... and of course, Bianca.

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

Sunday, August 14, 2011

"Fixing" Autism

Please take some time to view my first attempt at a video blog. Please share, like, and rate the video if you deem it worthy. Thanks!

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

Friday, August 5, 2011

Memory Lane

It happens to anybody that is a parent. One day you look at your kid, and it hits you. “He/She is (insert age here) years old? How did that happen? Where did the time go?” You try to value each day with your child and give it the weight it is due, but life gets in the way. You have to work and do things around the house, and you need time to unwind with a little “me time”. The next thing you know, your kid is about to start kindergarten and you start to understand first hand another part of the cycle of life. Your kids get older. Next you start to panic because you realize that the clock of mommy and daddy being the center of their universe is ticking. It is a small window in the grand scheme of things. Next begins the phase in which you try to stay relevant and involved enough in your child’s life that you don’t get shut out during the teen years and hope that you have nurtured your relationship enough that your children feel comfortable coming to you in difficult situations.

Saturday, June 18, 2011

A Father's Day Celebration: Members Only

For this post, I would like to pay tribute and thank all the fathers out there that love their autistic children unconditionally. This is for the dads that have what it takes to be a real man and stand by your family and take your vows seriously. This is for the dads that don’t run from their child being different, and for those that may just now be coming to the realization that they are entering a club that they had no plans on joining.

For many in a marriage, an autism diagnosis can be placed in the “worse” column of “for better or for worse”, but with patience and communication you can survive. Don’t bottle up your fears. Tell your wife, your friends, or share them with others in a blog and you will free yourself of the many burdens you are trying to shoulder and find strength in numbers.

You know that you are the father of an autistic child when:
  •  You know exactly what your child is saying even though she has never said it… EVER.
  • You go to visit your friends who have children and they apologize for how their kids are behaving, yet you never even noticed.
  • You have ever worn more of your child’s food then he has eaten, and he is 6.
  • You have ever tried “stimming” just to see what it is all about.
  • Using just your peripheral vision, you can snag crayons from your child’s hand before they go in the mouth.
  • You are on a plane with a crying child... and don't even notice.
  • You see a kid being a complete terror at the grocery store and you do not judge.
  • You have been punched in the face by your child and instead of getting angry, you laugh it off.
  • Your child saying, “I love you” even if by echolalia makes you feel like you are the king of the world.
  • You have eaten a family dinner in the dark on several occasions.
  • You have shared belly laughs with a child that you have no reason as to why they are laughing.
  • You have been given every crackpot theory about what causes autism and what will make your child better, and have kept yourself from going insane.
  • Your child has taught you greater patience, understanding, empathy & compassion than you ever thought possible.

Got any more out there? Go ahead and lay them on me! 
Join in the fun and let’s celebrate! You guys deserve it! 

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

Thursday, June 16, 2011

Not Those moments... These Moments.

If you have an autistic child, you find that not only does the condition fill you with concern for your child that is autistic; it does the same for subsequent children.

One of the cruelest and earliest symptoms of autism for some is regression. You have a perfectly happy and healthy baby that is hitting milestone after milestone, and then suddenly he/she is not. You also start to realize that skills your child used to have, are now lost or a struggle to achieve.

Bianca was about a year old when we noticed that she wasn't responding to her name as much. We just assumed that she was REALLY involved with whatever it was she was doing and was blowing us off.  A very brave friend of ours that used to work with special needs children brought to our attention that her behavior seemed abnormal and could be warning sign. I say “brave” because it takes a lot of courage to tell a friend of yours that you think that there MAY be something wrong with their child. It takes even more strength when you take into consideration that he knew of our struggle to have children. We had lost multiple pregnancies, my wife discovered she had a medical condition contributing to her struggle with maintaining a pregnancy and Bianca’s time in the womb was riddled with complications.

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.

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

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