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.

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.

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”.

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.

Fat Guys Aren't Always Jolly - Blogging Advent Calendar 2012

I gotta do something.

With 2013 rapidly approaching, people all over are making New Year’s Resolutions that they are going to break. The most common one is probably “to lose weight”. I rarely make resolutions, but I think this year I will. I think I am going to resolve to get back in game shape.

I have struggled with weight most of my adult life. Usually the more stressed or depressed I get, the heavier I get. Every once in a while I snap out of the funk and start eating healthy and working out and so far when I would do that… I would shed weight like crazy. My issue is that I am an abuser of comfort food and I am incredibly sedentary. Sure I chase after three kids, but outside of that… I am not moving too much.

I sit in the living room watching kids, I drive to work and then I sit at work. If sitting was an Olympic sport, then I would be a gold medal winner.

Remembering Sandy Hook - Blogging Advent Calendar Day 21

I really didn't want to have to write about the Sandy Hook Elementary shooting. I don’t want to look back. It is too awful and thinking about it gets me very depressed. At the same time I have an observation that is worth sharing. It has taken me a while to sort through the layers of my own feelings so that I could express myself properly, but I think I have hashed it out.

I would like to address the link made by many in the media that the shooter had Asperger's Syndrome and why it is both dangerous and sad. When I mentioned to a co-worker the fears of the autism community that people may draw conclusions that autistic people are violent by nature of their diagnosis, his reply was, “I don’t think you have to worry about that. Most people are smart enough to know that is not the case.”

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.

Fireflies - Blogging Advent Calendar Day 19

For Day 19 of the Blogging Advent Calendar I wanted to share this with you…

There is a lot of ugliness going around in regard to autism since the Newtown, CT shooting. I think we could all use this and the message it carries.

I hope you enjoy "Fireflies" by the Jubilee Project.

Hospital-ity - Blogging Advent Calendar Day 18

There is nothing fun about having to take a kid to the ER. Add autism to the mix and that makes it all that much less funner.

We had to take Bianca to the ER… again. Last time it was a broken foot, this time it was a REALLY infected finger. I just hate it. Nothing makes me feel worse than having to hold Bianca down while she is freaking out as doctors and nurses do stuff to her.

Yuck. It was bigger by the time we got to the ER.

Kudos to the ER staff who fast-tracked Bianca because they were sensitive to her autism and didn’t want her to be in a place that she was not comfortable.

It goes against everything in my makeup. I spend the vast majority of my time with Bianca working towards avoiding meltdowns. There is no option in the ER though. She is going to meltdown. She is going to get upset. She is going to hate me. I just hope that she forgives me.