VICTORY! - Comcast/NBCU and ABA Coverage

As many of you know on April 2nd, 2013 I released "An Open Letter to Comcast CEO Brian Roberts and NBCU CEO Steve Burke"

In the letter, I pleaded with Mr. Roberts and Mr. Burke as fathers to do the right thing and voluntarily elect meaningful autism benefits (ABA) to our company’s self-funded insurance plan.

I can honestly say that I thought I would be fired.

There were a few things in my favor. My new boss has been a friend since 1995 and I went to him before I released the letter and asked him for his advice before I published it. He was incredibly supportive as were all of my fellow employees.

2012 Blogging Advent Calendar

I thought I would do a little something different this holiday season. In honor of the time of year that it is, I would like to start a tradition of a Blogging Advent Calendar.

I don’t normally post on a daily basis. I don’t have the time for it. I don’t have the energy for it. I am also pretty lazy when it comes to writing. If my juices aren't flowing, it is hard for me to write. I have tried to just sit down and just write a post when I have nothing in particular to share… just to see what comes out. The answer: nothing.

I do however make great headroom in tweaking my iTunes library, playing Sporcle games or getting caught up on a television show that until I forced myself to write about something had no interest in watching.

I am so lazy in fact, that I am starting this advent calendar on December 3^rd, but writing this post as if it were the first day of December.

So here goes nothing, 25 days of autism-centric musings by yours truly. I will probably be reduced to writing about the day to day minutiae as opposed to larger topics that I like to tackle, but it should be fun and hopefully you get a kick out of it.

If you like what you have seen and read, please take a few seconds and vote for Lou's Land as one of Babble's Top Autism Spectrum Blogs. (Though I think this site is all kinds of messed up)

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 everything Lou's Land, please subscribe to my blog, "Like" me on Facebook and follow me on Twitter.

A Break in the Routine: Part II

Did I mention that I am NOT a morning person?

The appointment with the orthopedic pediatrician was at 7AM. I fought through the fog of sleep and got up. Thank goodness I set 5 alarms on my phone… I needed all 5 of them. Bianca needed several more. She was NOT moving. I got her dressed and carried her downstairs and out the door to the man-van. I strapped her into the car seat as her sleep remained undeterred.

We got to the specialists office and of course I had to fill out paperwork. Bianca was awake now, so I had to keep one hand on her and try to fill out the forms with the other hand while being tugged in every which direction. I felt bad handing it in because it looked like a serial killer had just filled out a form, but then I remember that they read “doctor” so I figured it was OK.

The staff was incredibly pleasant. Everybody was very concerned about Bianca and they were very in touch with the fact that she is autistic. They fawned over her, complimented how pretty she was and marveled at bond between us. It really made me relax. I was already nervous about the appointment and on edge because I had no idea what was wrong with Bianca.

A Break in the Routine: Part I

Since we could not really afford a big family vacation, I decided that I would use my remaining vacation time to take off a bunch of Friday and Saturday nights. I work a 4 day work week, so this would reduce my work week down to 2 days and allow me to enjoy some time off with the family. You may not be aware, but Tuesdays, Wednesdays and Thursdays (my normal nights off) are not exactly HOPPING. So, we scheduled a bunch of outings that we normally would not do and treated my time off as a bit of a “stay-cation”.

For the first time in our 13 years together, we actually went to a bunch of adult Halloween Parties that our friends hosted. It was a nice break in the routine for a couple that works opposite schedules to reduce babysitting time and costs and share a bed with a 2 year old that refuses to sleep in his own room anymore.

Happy Birthday Bianca!

I can hardly believe that it has been 7 years since we first met. I remember it like it was yesterday. That moment remains in a three-way tie for the happiest day of my life.

You changed me in so many ways. You have taught me what it means to be a man and father, unconditional love, acceptance, patience, the danger in projecting my dreams onto others and how to avoid a head-butt.  Each day since you were born has been brighter. Even the darkest days with you in my life are brighter than the best days before you were born. You give life reason and meaning.  You have shown me my mission.

I am so proud of all you do. Every little added skill, word, sign and ability makes me marvel at your can-do spirit and your ferocity at tackling life’s challenges.

If I could have designed the “perfect daughter” before you were born, autism certainly wouldn't have been in the equation. That is why I am glad we as parents have no say in who enters our lives as children. I am glad and proud that you are OUR daughter, autism and all. I can’t imagine my life without you exactly as you are. Of course I hope that you can overcome the obstacles life has placed in your path, and I know you will do your best.

I have said it before; you are the greatest birthday gift… EVER. So as I share this 7^th birthday with you, please know that I love you for the person you are and for the person YOU want to be. I will serve as your protector, your champion and your father all along the way; never regretting that you came into my life. I hope that as you grow older I can impart on you that just because something is a challenge, doesn't mean that it isn't enjoyable, rewarding and worthy of love.

Thank you for 7 years of lessons. I look forward to a lifetime more. .. smiling, laughing and loving all the way.

If you like what you have seen and read, please take a few seconds and vote for Lou's Land as one of Babble's Top Autism Spectrum Blogs. (Though I think this site is all kinds of messed up)

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 everything Lou's Land, please subscribe to my blog, "Like" me on Facebook and follow me on Twitter.

My One Percenter

I want YOU to make Autism an important issue in the election!

I am going to try and not get too political here. Truth be told, that is a difficult thing to do, because I tend to wear my political leanings on my sleeve.

All this talk about the secretly taped Romney fund-raiser, and his assertion that apparently 47% of the electorate is full of people that are looking for a hand-out and have feelings of self-entitlement got me to thinking.

I don’t know about 47%, but at least around 1% of the population should feel like they are entitled. They should be entitled to the therapy they need without discrimination from health insurance companies. They should be entitled to going to school free from bullying. They should be entitled to every opportunity imaginable to reach their full potential.

The Mall




Outside of torturing our kids by making them see Santa every year, the mall has been a place our family has avoided over the past couple of years. Once our son was added to the mix, it became impossible for one parent to control all three kids and just not worth the tension it would cause between my wife and I if we all attempted to go.

We tried visiting the mall using several different configurations: Luis and Bianca in a dual stroller and Sofie walking, umbrella stroller/dual stroller combo, dual stroller/backpack with a leash, two umbrella strollers, renting one of those car strollers from the mall information booth… you name it. No matter the combo, it was always a nightmare.

50 Cent: Apology Accepted

@50Cent has now apologized for the offending tweets that he made regarding autism and special needs children. I think it is our responsibility as those that criticized his comments to work just as diligently to let people know that he has apologized. Too often in these situations, it is the bad that gets spread around like wildfire and the apology gets none of the attention.

My 2 Cent

Copyright SPIN Magazine

With the holidays and an illness in the family, I have not been on top of everything autism as I usually am. It is also the reason for the lack of posts in recent weeks. Yesterday, it was 103 FREAKING DEGREES OUTSIDE… so I kept the kids inside and while they were playing and overloading on games and television… I was surfing and catching up.

The article that caught my eye was that the lovely Holly Robinson Peete wrote an open letter to Curtis “50 Cent” Jackson for having used autism as the basis of an insult in a tweet to somebody that pushed his buttons. Mr. Jackson’s tweet (which has since been deleted at Mrs. Robinson Peete’s request) was:

“@50cent: yeah I saw your pic fool u look autistic. I don’t want no special ed kids on my time line follow some body else."

I will give 50 the benefit of the doubt and say that I don’t believe that he honestly feels this way and that he meant these words in jest. Even if he was joking, it wasn’t a wise choice of words on the part of a guy who makes his living… using wisely chosen words.

Summertime Blues

For 12 years of my life, there was nothing I looked forward to more than the last day of school and the start of summer vacation. I hated school. Probably more than the average kid. I liked seeing my friends enough, but the structure of school and the homework was just not my style. For some reason those three months of summer vacation seemed like an eternity. There were so many adventures to go on and so much to do with friends. Summer meant sleeping in, baseball, riding ATVs and family outings. My friends and I lived it up each summer as we would regularly go to one of my best friends’ cabin on a lake and go boating and tubing. There were summer romances and festivals to go to… all in all, summers were a care-free easy going time.

Now I have a six year old with autism spectrum disorder and summers mean something completely different. They mean breaking old routines and fighting to establish new ones. Searching desperately for summer programs and making sure that we build upon the advances she has made in school with one on one interaction. We are always fearful that Bianca will regress. Summer programs aren't cheap and when your budget is already pretty tight as it is, you want to make certain you are paying for something that is going to be a benefit.

A Happy Anniversary

One year ago today, I transferred a number of Facebook notes that I had written about my family’s experience with autism to Blogger and started Lou’s Land. I didn’t really put a lot of thought into it. I didn’t think anybody cared what I had to say and only did it after being bugged by several friends to make my experiences public.

What I discovered was that not only did people seem to relate to my writing; I could entirely relate to the feedback that I got in return. People shared their life, their stories, their intimate fears, their joys and triumphs all of which helped to make me understand that we were not alone in our journey. Where one on one therapy had failed, the online autism community had healed me. When you are scared of what lies ahead and are searching for answers, it helps to find people that have been where you are and can show you where you are going.

Walk Now

To better understand somebody, don’t just walk a mile in their shoes… walk three miles by their side.

This was the conclusion I drew last year after participating in my first Walk Now for Autism Speaks event in Chicago. The event moved me so greatly and the people touched me so deeply that it literally changed my life forever.

Autism was no longer a deserted island. There were people out there that lived it and breathed it every day just like I did. There were families that looked just like mine walking the path down Chicago’s beautiful lakefront. Their struggles were our struggles. Autism was not the isolating sentence I thought my family had received, it was quite the opposite.

The Conversation: Part 1

(Just a quick note… the conversation is paraphrased and not verbatim.)

It had to happen someday. I was hoping that it would be much later on, but I suppose we were just postponing the inevitable. We have to do this all over in a few years anyway, so I guess we might as well get on with it and hope for the best.

I have thought about it many times. I have had the conversation in my head more times than I can count. I planned well in advance because I knew at some point in her young life, Sofie was going to have to understand why Bianca is the way she is, she was going to have questions and it was only a matter of time before they came up and we had to explain autism.

STUPID Studies

Pregnancy Linked to Birth of Autistic Children

(Somewhere, USA) – A revealing new study today released from the Science Tribunal of the Uterine Pregnancy Investigation Department indicates that there are direct ties between women that have become pregnant and the birth of children that later become diagnosed with Autism Spectrum Disorder (ASD).

One in a MILLION!

1 in 88? Nope. 1 in a MILLION!

… and here I am again… staring at the ceiling. It could be that I am still excited from meeting John Elder Robison earlier tonight. Maybe I am still geeked up from beating my boss in our NBA 2K12 league? I don’t think that is it though.

 Here we are a couple of days out from Autism Awareness Month, a few days away from Autism Awareness Day and the CDC has rocked me. Why? I don’t know. Does it really come as any surprise at all to anybody with a child on the spectrum and in the autism community that the diagnosis rate is higher than previously thought? Not I.

M&M’s (Miraculous and Motivating)

With motivation, people can accomplish amazing things. They can lose weight, run a marathon, learn new skills, climb mountains or throw themselves out of planes. Most people find motivation on their own and without the help of others, sometimes they need a gentle push. People get inspired and use that to their advantage to do things that they might not otherwise attempt to do.

For kids on the spectrum, motivators are often found by the parents. They vary as greatly as the individuals on the spectrum themselves. Some have a favorite toy, others a reward system like stickers. Some get rewarded with food like McDonald’s fries or a favorite fruit.

A Real Concern

If you are an autism parent, you have all sorts of information stored in your brain that B.A. (Before Autism) you would have never imagined knowing. You know “1 in 110”. You know about self-funded and fully funded health insurance. You have learned a string of acronyms that made your head spin when you first heard them, but you now rattle off like a maestro conducting Beethoven’s 5^th.

If you have done any investigating into research and funding, I am also certain you have come across, as I did when researching for my “Fixing” Autism video, that more children will be diagnosed this year than with AIDS, diabetes and cancer combined.

This is a pretty startling statistic. But bring that statistic up, and right away proponents of other causes go on the defensive. The most common argument that I have seen used is the following:

“AIDS, diabetes and cancer will KILL you! They are terminal! I have never heard of anybody dying of autism!”

It is usually also preceded or followed by insults.

Autism Awareness/Skyscraper by Demi Lovato (Cover by Nichole337)

For the latest Autism Awareness project, we put together an incredible team of people. I had a chance to team up with the fantastic Nichole337. 

If you do not know who Nichole337 is or her story, please check out:

Known for her music videos, we knew that if we were working together we had to have Nichole sing. We just wanted people to see Nichole in a professional setting while we raised a little awareness. Here is the result.

(See video in larger sizes by clicking on the name of the video in upper left of window while playing)

What an AMAZING experience! It was such an honor to work with Nichole337. She is such a sweet person, you love her the second you meet her. Thank you Nichole for teaching me so much throughout the making of this project and being such an inspiration to so many. You are a hero. Your autism awareness video is teaching a mainstream audience that so desperately needs to be educated about what autism is and about those touched by it.

If you do not know who Nichole337 is or her story, please check out:

Dear Bianca...

In honor of Autism Sunday, a letter to my daughter:

Dear Bianca,

Do you know how perfect you are?

Your smile can melt the coldest of hearts. Your laugh fills the air with so much joy that one can’t help but share in your happiness. Your hugs tell me that not only do you love me, but you appreciate me.

Each day you surprise us. Your intelligence is so impressive. You communicate so much by saying so little. Your deep, brown eyes talk for you. They let whomever it is that you need to communicate with know what they need to know… unless you feel like talking. When you do decide to use your incredible vocabulary, I light up. I know how much you are trying. I know how badly you wish you could communicate verbally without such a struggle. I see that in your eyes too. Especially when they tell me you want more juice, a chocolate chip cookie, that you want to hog the television, or that you want to eat yet ANOTHER cucumber.

There are times that I find myself just staring at you and marveling at how pretty you are. Everybody says that you and your brother look just like me, but when I look at you I see your mother’s beauty shining through. We struggled for so long to have a family that when it finally came to be, your mother and I were ecstatic. I would not for ONE SECOND of my life ever regret having you. Autism be damned, you are my daughter. You are my light. I could not love you any more if you did not have autism and I certainly would never think to love you any less.

You have taught me so much in these six years. Because of you, I am now a fully realized man. Where once stood a sarcastic, narcissistic boy stands a man humbled and full of compassion. I know what I am supposed to do. I know who I am supposed to help. I thank you for helping me to understand what is important in life and what my priorities should be.

There is still a long road ahead of us. I couldn’t ask for a better travel companion.

I love you Bianca. Thank you.

Dad

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

Sleep and Autizzz...



Having been up since 3:00 AM, Bianca could no longer fight off the Sandman.



Irregular sleep patterns are probably one of the most challenging things an autism parent faces. As we all know, things can be stressful when dealing with meltdowns or obsessive behavior that you are trying to curb. If your child is non-verbal and can’t express his/her need… that can be stressful too. None of that is helped by a lack of sleep.