"Be Your Way"

The following is a Facebook status written by my wife about an experience she had recently at an area Burger King.

A little context here... This particular Burger King is one that I spend hours at and quite a bit of money. My mother-in-law has pretty advanced dementia, so we usually drop my wife off so that she can have some quiet time with her mom while the kids and I kill time at this Burger King because of the indoor play-land and free WiFi. Bianca gets to use her iPad and my other two get to run around like nuts and blow off steam.

It was because of this familiarity, that my wife chose this particular establishment to duck into in a time of desperation.

Marty's Words

Martin DeMaat was an improv teacher at Columbia College and the Artistic Director at Second City Chicago. I took every improve class I could with Marty because he was such an amazing and inspiring person. He genuinely cared and his approach to imrpov was to create as safe a place as possible for the performer. It was a true joy to be instructed by him and his passion for the art form was contagious.

I wrote down in my notebook at the start of my second class with Marty a few things that I noticed he had said at the start of the previous class I took with him as well. Marty said many memorable things, but a couple of things he said have stuck with me to this day.

"You do not have the right to feel inadequate."
"You are pure potential."

El Mero Mero

Well... not quite the Father's Day I had prepared for from an advocate perspective. I had a post about half written that I had planned on finishing yesterday, and I had some ideas from a sharing perspective as well... all of that got placed on the back burner though.

The patriarch of my wife's family, Bianca's abuelito and hero passed away Saturday at the age of 92.

He was my wife's everything. I always say that I am the third most important man in my wife's life... her dad, our son and then me. And I am fine with that.

A Cut Above the Rest

Today I paid $20 for a $10 haircut... and couldn't be happier.

I took Bianca to get her haircut today, and as soon as we walked into the place, she started to melt down. I sat her in my lap to try and keep her calm but she wanted none of it. She was flailing about, grinding her teeth, trying to head-butt me and kicking all over… and the stylist had yet to even touch her.

As Bianca weeps uncontrollably I wonder why I even bothered giving our name ahead of time and killing time at Target. The whole reason I didn’t stick around was because I didn’t want Bianca to get agitated while waiting. I was trying to be Superdad and was out with my three kids and adult male cousin who is great with our kids, but certainly not used to Bianca blowing a gasket in a public place. My bride was attending the graduation of a family friend and I wanted to surprise her with a new summer “do” for Binks.

A very meek and demure looking lady looked at me as two of my kids were chasing after one another like maniacs and Bianca was in hysterics and hesitantly asks who I was with. “Bianca” I reply while giving a head gesture towards the kid who is now on the floor with tears streaming down her face and snot bubbles coming out of her nose.

School Safety: Avonte Oquendo's Legacy

The Riverview School as seen via satellite from Google Earth.

The name of the school sends shivers down the spine of any parent to an autistic child. The Riverview School, a school for children with special needs, screams danger right there in the title yet the security provided the children of that school was nowhere close to being proportionate to the level of danger provided by its surroundings. A satellite view from Google Earth of The Riverview School. It indicates that those warning bells are justified.

On October 4^th 2013, 14 year-old Avonte Oquendo slipped away from his class while on the way to a technology room. He allegedly ran past a security guard, out a side door and was never seen again.

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.

The Mickey Mouse Club-bing

The State of Illinois passed measures to change their policy regarding handicap placards and parking meters.

As it currently stands, if you have a handicap plate you need not feed the meters. You can park at any metered spot and not have to worry about having to return in two hours to feed the meter or looking for specific handicapped parking spots. The city does offer those as well in case people with disabilities have trouble finding parking.

This policy has saved my family immeasurably. We have a disability plate so that we can park close to stores. Bianca, as I have written about, is an eloper. She also LOVES to go to the store. Leaving... not so much. Often times I have had to drag her out in the middle of a meltdown with the other two kids in tow, so being close to the store makes that all a little more manageable.

A Spectrum of Similarities

As I read that horrible letter by that horrible person I focused on the words that were written. There were words being used to describe young Max that were vile… disgusting… evil.  Then I started to realize that those words were not being used to describe Max at all. They were venom… nothing more and nothing less.

J. Cole's Sincere Apology to Autism Community

My dad always used to tell me that a real man admits his mistakes, and then does something to rectify them.

J. Cole has done exactly that.

30 Lessons Learned

I thought I would take a moment and share with you some of the important lessons I have learned raising an autistic child. You may want to tuck these away in the ole memory banks so that you can call on them when need be. Here are 30 in no particular order…

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.

Lighting It Up Blue

April is Autism Awareness Month and April 2^nd is World Autism Awareness Day as declared by the UN General Assembly. It is also the day that Autism Speaks asks for residences, businesses and buildings to change their exterior light bulbs from white to blue in an effort to kick off Autism Awareness Month and raise awareness via a promotion called Light It Up Blue.

Before we are even there I have already read my fair share of posts and comments criticizing the event. I have seen attacks on everything from the event actually doing nothing to help autistic people, to wondering just who it was that chose blue to represent the autism community in the first place.

If you are relatively new to the autism community… get used to it. It seems that no organization or individual can do much of anything without somebody thinking they are going about it all wrong. Stay positive though. Just go with what you feel like is the best way to honor your autistic loved one or if you are autistic, whatever makes you feel proud. For my family, we enjoy participating in Light It Up Blue.

Bear, Duck, Frog

As anybody that follows regularly knows, the potty is Bianca's muse.

Yet again while sitting on the potty, she surprised me.

She has a host of stuffed animals that I refer to as "the guys" but she has lately been referring to as "my babies". On a trip to the ER a while back for an infected finger, she brought them along for support and we passed the time labeling them.

Sitting on the potty today she started to name three that we left behind in the living room so that she could sit on the potty.

"Bear" said Bianca, “Duck. Frog.”

“Yes.” I replied, “The guys are downstairs. You can play with them once we are done on the potty.”

“Bear” Bianca repeated with a smile. She then grabbed my hands and forced them to cross. “Bear”

Huh?

“You want a bear hug Binks?” I asked.

New Crocs

You know that old saying about walking a mile in someone's shoes? Well I am not sure how many miles Bianca walked in her Crocs. She wears them everywhere. No matter the time of year. She sleeps in them. Sometimes she bathes in them... it gets them pretty clean!

A Sign of Strength?

Let me preface this post by saying that I am not a “We can only write about good things when it comes to handling life with autism or an autistic loved one.” I am also not in the business of attacking parents or questioning their love for their children, parenting, etc. I think we are all far to quick to judge and call people names when we do not know their reality. As long as people are responsible and careful about what they write, I believe we can tackle any number of issues that arise and that others searching for answers may find comfort in knowing that they are not alone.

It was exactly that desire to draw comfort that drew me to a recent article on The New York Times website.

 

Twas the night.. Blogging Advent Calendar Day 24

Christmas Eve… the big day for us.

We put the tree up and decorate on Christmas Eve, then spend the evening with our family at one of my brother-in-laws house. The kids usually fall asleep in the car on the way back home, so after we carry them off to bed “Santa” finishes any last minute gift wrapping and takes all of the presents out of hiding and places them under the tree.

The highlight for me is usually playing Santa at the family gathering. I started doing it the Christmas after Bianca was born. She is a November baby, so when her first Christmas came around she was only like 6 weeks old and so was her little cousin. Playing Santa allowed for both of them to get a picture with the jolly elf for their first Christmas. They family has expanded at an incredible rate and 7 years later, there are now 13 kids ages 7 and under so Santa is now a big hit. The adults in the family like it as well because Santa works a little “blue”.