An Open Letter to Comcast CEO Brian Roberts and NBCU CEO Steve Burke

Dear Mr. Roberts and Mr. Burke,

My name is Lou Melgarejo and I am a Comcast/NBCU employee. I have what I consider to be my dream job. I am a married father of three. I am first and foremost a family man. My oldest daughter is a beautiful, energetic, happy and incredibly intelligent 7 year old girl named Bianca. Bianca happens to be autistic.

The current autism diagnosis rate according to the CDC is 1 in 88 while a recent study suggests that the number could be even higher at 1 in 50 or 2% of school aged children being autistic. Our daughter Bianca is one of those 88, but we like to refer to her as being "1 in a million".

Autism Shining - Blogging Advent Calendar 2012

Do you want to feel good? I mean REALLY good? Need a pick-me-up? Want to have your insides get so warm and fuzzy inside that you feel like you could just burst?

Then you really need to check out the Autism Shines Facebook Page … I mean really. Like now.

Started to “show the world all the positive attributes of autism” the Facebook page encourages you to upload a picture of yourself or somebody you love with autism and share the wonderful things you know about them… and people have responded.

Hard Headed - Blogging Advent Calendar Day 20

Sometimes you just aren’t fast enough.

When Bianca wakes up in the middle of the night, she tends to get upset and meltdown. Who doesn’t?

Unfortunately for us though, it means she has to find a way to release the pent up energy that comes from not being able to communicate exactly what it is that is upsetting her. She will cry, kick, flail and punch… but most often her frustration manifests itself in head-butting. So when we hear Bianca get REALLY upset, we run into her room to soothe her.

Who Turned Out the Lights? - 2012 Blogging Advent Calendar Day 17

Breaking away from Newtown, CT posts and marveling at my son's appreciation for a top that we have now spun 1000 times without complaint from dad because I have never been so happy to do something so mundane with my child...

I am not sure if it is part of Bianca’s autistic makeup or perhaps some sort of OCD, but for some reason Bianca has really been into turning the lights off lately.

There have always been some lights in the house that upset her if they are on. The kitchen light is the most obvious and difficult one to address. Do any of you have to cook in the dark? It is easy to microwave in the dark, and that is the extent of my cooking prowess, but for my wife who likes to cook up our favorite Mexican dishes… it is difficult.

It doesn’t appear to be a sensory issue because she doesn’t mind certain lights on. It is just that others being on upset her. I have tried making her turn them on, keeping them on all day, seeing if she wanted sunglasses… nothing seems to help, except turning the light off. She has no trouble with the lights on at school or at a mall or store, but in the house… some lights really bug her.

Dinner at Rancho Melgarejo ;-)

We have eaten in the dark for the better part of 4 years now. The dining room light is another light that bothers Bianca a lot. It makes things interesting to say the least. Once Bianca is asleep, we are so used to being in the dark that we often forget to turn lights back on.

What is funny though is when Bianca gets ready for bed and goes upstairs. She turns on the light in the hallway so she doesn’t trip and then she turns the light on in her room and goes and lays down in her bed waiting for me to kiss her goodnight and turn the light out.

I am thinking about modernizing our living room (where we spend the vast majority of our time as it is baby-gated off from the rest of the house) and putting in remotely controlled recessed lights and a password protected digital thermostat along with a hardwood or laminate floor. It may be the only way. I love making things comfortable for her, but at the same time there is only so much of our lives we can live in the dark.

The problem is that since I am not 100% sure what the root behind the obsession is that whatever we do could just upset Bianca more and that is the last thing I want to do.

Anybody else struggle with this? Maybe it isn’t lights, it is something else? I would love to hear your stories and what approaches you have taken.

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.

Newtown Reflections - Blogging Advent Calendar Day 15

Yesterday's post today. Because well...

I have to be honest. It is the day after the Newtown, CT tragedy and I am still at a loss. I just don’t feel like writing about my life. Not when so many other lives are being changed in unimaginable ways.

One thing I can write about is how the media is handling the shooter’s possible Asperger’s diagnosis. As I watched the coverage on CNN, a shiver went up my spine the moment I heard autism referenced. Within moments I started getting word online that other “infotainment” networks were really focusing on the autism angle.

Autism doesn’t make a person a mass murderer any more than having blue eyes makes you a homicidal maniac.

So instead of writing anything, and since there are people far more eloquent and knowledgeable than I, I thought I would share some statements as well as some posts from friends…

Name Dropper - 2012 Blogging Advent Calendar Day 12

There are good days… and then there are GREAT days.

Yesterday was a GREAT day. It didn't start out that way either. The “day” actually started with me getting home to find Bianca restless and not wanting to stay in bed. So we went down to the living room and Bianca partied like a rock star until… 5 a.m. before she finally cuddled up to me and passed out.

It was my wife’s day to wake up with the kids and she told me that Bianca was none too happy about getting up for school after having been asleep for a whole 2 hours. I worried about her being super cranky and lethargic at school, but when I picked her up at the school to take her to therapy, I was told she had a good day.

We went to speech therapy and I got concerned because while we were in the waiting area she started to melt down. Nothing happened that I was aware of; she just got upset, clinched her teeth and charged at me. Then she started to cry and tried to head-butt the chair and me. I figured that the fatigue must have been kicking in. As the therapist walked off with her, I warned her to have her guard up.

When Bianca returned, the therapist said she had a great session until it was time to transition to leave. She was having a good time, and I know Bianca LOVES her therapists so it was not too surprising that she wasn't in the mood to leave. She rarely is. At least she didn't get upset about not going to swim therapy.

We got home and we only had a couple of hours to play because Sofie had her Christmas program at school. So we got snacks, went potty and played around for a while. Bianca was showing no signs of a kid that had only slept for 2 hours the night before. Daddy was dragging though.

So I hopped on the computer to check some email and social media. Bianca came up to me and got between me and the table and started to hug me, so I went to the Word document I had open, and hit enter until I got to a new page, and made the font size really big. I then looked at Bianca and asked, “Bianca. Can you spell your name for me?”… nothing. We have worked on it some. If I ask Bianca to type a letter, she will do it 9 out of 10 times. This time though, I was asking her to recognize the request, and then spell out her name… without my assistance.

I asked her again, “Bianca. Can you spell your name for me please?”

She looked down at the keyboard, and then while saying the letters… proceeded to type her name!! BY HERSELF!!

I was stunned. I didn't know what to do. I heaped a ton of praise on her but I didn't want to freak her out. I clicked over to my Facebook page that was still open and just typed, "YES YES YES!!!!!"

I had to document this… the video camera was in the basement, so I grabbed my phone, started to record, and just HOPED that Bianca could repeat what she just did.

Sure enough…

The REALLY amazing thing to me was that she even typed “MnM” for “M&M’s”!! Sure she fat fingered a few keys and she held on to the letters too long, but she was SPELLING HER NAME!!! By herself. Not hand over hand… by herself!

Progress people… hope… faith… the layers are being peeled. I just can't wait to see what they reveal.

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.

That Awkward Moment When... - 2012 Blogging Advent Calendar Day 11

That awkward moment when a stranger starts talking to your non-conversational autistic child, and waits for a reply.

It happens a lot with us. We will be at Target or the grocery store and inevitably a little old lady will see Bianca and want to compliment her. Bianca is a really pretty little girl… big eyes, long hair and an incredible smile. Her looks betray her more severe autistic traits in the eyes of a stranger. They just see a pretty little girl who is smiley and singing. Her looks also work against her when she is melting down as well because she looks like a 7 year old that has parents that do not know how to control their child.

So what do we do when that moment comes in which the well-intended stranger comes up and asks Bianca her name, or how old she is only to get what they perceive to be the cold shoulder? Added to the mix is the fact that we are Latino. I could pass for a whole myriad of ethnicities, but my wife is pretty clearly Mexican. So then the nice person starts to speak slower and LOUDER. I think it is because they may suspect Bianca doesn’t speak English, but it could also be that they think she is deaf. 

Autism Beatnik - 2012 Blogging Advent Calendar Day 10

Let me set the mood if I may... I would like to take you to the Beat Generation of the 50's and 60's. We are in a dimly lit cafe and I am stepping up to the mic weighing 80 lbs less and with my goatee still completely black.

I strain to look at my note-cards through my dark glasses, bongos between my legs and a steaming hot cup of coffee (in this fantasy I like coffee) next to me. We are in San Francisco and the vibe is right.

I play a riff on my bongos as you, the audience, start snapping your fingers... Jack Kerouac eat your heart out...

It Comes in Waves - 2012 Blogging Advent Calendar Day 9

We work so hard. We see so many improvements in some areas, while others seem to be in a holding pattern. Then there are the times we worry that she is regressing.

Bianca goes through cycles. We notice that she will have a flood of breakthroughs for a period of 3-4 months and then it is followed by some kind of regression. It is almost like a wave crashing onto the shore. The wave advances and beats down on the sand that is in its way and then retreats. But as the wave returns to the ocean it carries some of the sand with it and slowly over time erodes the beach.

TIME for Action - 2012 Blogging Advent Calendar Day 4

Yesterday I was stunned to see that on my friend Luau’s personal Facebook page he posted a link with a few choice words to the following article and headline written by John Cloud (@JohnAshleyCloud)  that appears on TIME’s Health and Family section:

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.

Nataly's Letter

In the wake of Ann Coulter’s unapologetic use of the “R-word” I wanted to share a beautiful letter written by Bianca’s friend Nataly.

Nataly is one of the helpers in Bianca’s dance class. She is an incredibly happy, warm, loving, fun young lady… who just also happens to have Down Syndrome. If you knew Nataly, you would understand that her disability is the least remarkable thing about her.

Here is what Nataly wrote on the Voces de Familia de Indiana Facebook Page, a page that was just started by a few Latino special needs parents in Indiana. First is the original in Spanish, and then I have it translated in English.

Thank you Nataly for being a great role model for ALL kids. You are an inspiration and our family is lucky to know you.

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.