Guess what?

One of the things that I truly appreciate about Bianca is the level of our communication. I understand her like no other person. I know what she means when she furrows a brow just so, squeals a certain way or pulls my hand in a certain direction… and of course when she just plain asks for stuff.

 Her speech is coming along pretty well. More and more she asks for specific things or uses words to describe her environment. Just the other night while at a party she told me “Back home” when she clearly had enough of the environment and all that was going on. That certainly makes things easier and has led to a lot less meltdowns over time, but despite all the advancements her level of communication is still quite different and definitely well behind that of a NT 7 year old.

I don’t know why this particular thing I am about to share is such a source of pride and joy for me. It seems so incredibly silly… ridiculous really. But maybe that is exactly the reason why. It is just fun.

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".

What's Old is New Again

"Success is stumbling from failure to failure with no loss of enthusiasm." - Winston Churchill

With Bianca at 13 months. Before she regressed.

When Bianca was 12-13 months old (before her regression) she was ahead of the curve on a lot of things. One of those things was labeling.

One of my favorite things to do with Bianca when she was a baby was to grab one of her favorite picture books and flip the pages as she pointed to and told me the names of ALL of the animals. It also became one of the things that made me angriest about the regression… that it took that from us. Bianca became more content chewing on a book than she was labeling once her regression started to kick in.

I would grab her favorite book and sit down with her and witness the gradual decay in her ability and/or interest in labeling. She lost the words altogether eventually. Asking her to participate in an activity became futile. She was much more content to be on her own and to become engrossed in trying to find any microscopic crumb on the floor to mouth. It would depress the hell out of me.

Still, you move on.

Build-A-Bear? Build a Foundation.

“If we are to teach real peace in this world, and if we are to carry on a real war against war, we shall have to begin with the children” – Mohandes Ghandi

It has to start somewhere right? Traditionally that has been with the children.

When studies show that nearly half of all autistic teens reporting that they have been the victims of bullying, we have to get the message to kids sooner. Acceptance and tolerance are vital to ending bullying. Those lessons MUST be taught and reinforced at home as well as in the classroom. We must be teaching our kids about the power of love and leading by example EVERY day.

In order to do that, there has to be a dialogue. There has to be an open line of communication. Sometimes that can be a challenge. We don’t always know how to talk to kids on their level and the fear of saying the wrong thing can paralyze us into inaction. What we need is a little confidence and some tools, something to break the ice and open up the give and take required in an important conversation.

Spring Breakdown

Monday starts Spring Break for the kids. I can’t really relate because I never felt this way in my life about school… but both of my school aged children are bummed about it. So are the wife and I.

Sofie just LOVES school. A few weeks back she was complaining that her tummy hurt. She was all bundled up and ready to go catch the bus when she stopped dead in her tracks and held her stomach. “Can you kiss my tummy daddy? It doesn’t feel so good.” I leaned over gave her a kiss on the stomach and not two seconds later she vomited all over the place. When we had to call her off of school she cried and cried. “I don’t want to miss school! I will miss out on all the fun!” she bawled as gigantic tears streaked down her face. She is in kindergarten though, so I will revisit this feeling she has towards school in a few years.

Bianca on the other hand… she gets bummed in a different way. Her sleep pattern gets disturbed, she becomes irritable and starts to act out. Head banging increases, meltdowns increase and then it takes several weeks to get settled back into her routine once school is back in session. So one week off, sets her back about a month.